Characterization of functioning in breast cancer survivors: an interpretive descriptive analysis study based on the international classification of functioning, disability, and health (ICF) and the Item-Perspective Classification Framework

doi:10.21203/rs.3.rs-2002780/v1

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Research Article

Characterization of functioning in breast cancer survivors: an interpretive descriptive analysis study based on the international classification of functioning, disability, and health (ICF) and the Item-Perspective Classification Framework

https://doi.org/10.21203/rs.3.rs-2002780/v1

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published 26 May, 2023

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Purpose

Breast cancer survivors experience a range of disabilities compromise their independent function. This study aimed to examine their perspectives and experts on their functioning and interpret concepts with the international classification of functioning, disability, and health (ICF) and the Item-Perspective Classification Framework (IPF).

Methods

Interpretive descriptive methods were used with in-depth interviewing with 16 breast cancer survivors and 22 experts using a semi-structured interview guide. The interviews were recorded, transcribed, and qualitatively analyzed using thematic analysis. The extracted data were linked to the ICF Core Set for Breast cancer and were interpreted by the IPF.

Results

Four main themes emerged to define the functioning of BC survivors: body functioning, physical functioning, social functioning, and mental functioning. Three other factors were also categorized as modifiers of functioning personal, emotional, and environmental. The 592 extracted meaningful concepts were linked to 38 (47%) categories from the ICF: 16 Body Functions, 14 Activities and Participation, and 8 Environmental Factors. The IPF classified all the extracted concepts, and most rational appraisals fell in the biological (B) domain. The concepts that required emotional appraisal were classified in Psychology (P).

Conclusion

Psychological and emotional factors were pivotal in defining functioning in patients with BC.

Breast Cancer Survivors

ICF

Function

Item-Perspective Classification framework

Breast cancer is currently the most widespread cancer among women worldwide, with 2.3 million new cases identified in 2020 that account for 11.7% of all cancers. It is the fifth cause of cancer worldwide, with 685,000 recorded deaths (1). The disease's advances in multiple treatment approaches (such as surgery, radiotherapy, chemotherapy, and hormone therapy) have increased the number of breast cancer survivors (2). After treatment, many survivors will experience a wide range of medical, physical, cognitive, and emotional treatment-related symptoms that affect their daily lives (2, 3). The type and extent of women's problems are significantly different. Fatigue, cognitive problems, pain, lymphedema, fear of disease recurrence, poor body image, premature menopause, mood disorders, and sexual dysfunction have widely caused long-term distress in these patients(4). Side effects of treatment and inactivity secondary to treatment have impaired women's ability to maintain functioning and participate in meaningful daily activities in self-care, leisure, and social activities, affecting their quality of life and causing long-term disability in these patients (5). These cases may, in turn, negatively affect the economic situation and disrupt interpersonal relationships (6).

Before, functioning was considered a physical function, such as muscle strength, range of motion (ROM), and cardiopulmonary endurance (7, 8); however, the International Classification of Functioning, Disability, and Health (ICF) uses this multidimensional or biopsychosocial approach to describe functioning with a broad perspective that includes one's physical condition and aspects of emotional, psychological, and environmental-social conditions (7). The ICF core sets have been developed for several health conditions, including breast cancer, to facilitate the implementation of the ICF in clinical practice (9). The core set provides a systematic framework to cover a range of functions and disabilities associated with breast cancer. The core set for breast cancer contains 81 categories in different areas: 26 body functions, 9 body structures, 23 activities and participation, and 23 environmental factors (10). Previous studies aimed to develop questionnaires that included the items extracted from the core set (11, 12); however, the content validity of the ICF core set for breast cancer is limited to addressing various cancer-related issues (13).

Findings from validation studies on the ICF core set for breast cancer performed in a limited number of countries, such as Germany, Australia, Ireland, and Korea, have led to adding categories to different parts of this core set (14–17). The extra extracted codes differ among women with breast cancer in different contexts and environments. For example, in a study by Glassel, some codes were extracted from personal factors, such as lack of knowledge about the disease, pain self-management, and adaptive strategies, which were not considered in the core set of breast cancer (14). Another study reported extra codes such as changing social attitudes, supportive role of pets, economic policies and systems, placement and employment and categorized them in environmental factors (16).

Therefore, considering the socio-cultural differences in the definition of functioning in patients with breast cancer, we aimed to explore the area of functioning in which the patients would have problems based on the experience of therapists and physicians who treated patients with BC with a quantitative method and link the extracted concepts to the ICF categories.

Study Approach/Design

Interpretive description(18)was used to help us to understand the functions of women with breast cancer. It is an inductive approach that focuses on capturing themes and patterns within subjective perceptions of the patients and generating an interpretive description to help us understand their functioning. In this method, the investigator does not act as an independent observer but co-creates the knowledge using previous theoretical or practical knowledge(19). This is consistent with the relationship between the study’s clinical researchers and the breast cancer community participant members.

Sampling, Recruitment,

We used purposeful sampling for recruiting the patients and snowball sampling for the experts. Our local ethical committee approved the research protocol. Informed consent was obtained from all subjects involved in the study. We did not report personal factors associated with the quotes to keep anonymity.

Data collection

The interview guide was designed to explore a sequential pathway of topics related to breast cancer patients' functioning and health. We used a semi-structured interview that guided us based on the research question. We included women over 18 years of age, with an initial breast cancer diagnosis, in stages I-III > 6 months or < 4 years after their initial medical treatment (surgery, radiation therapy, hormone therapy, and chemotherapy). We included patients who could communicate verbally and who consented to express interviews. Hospitalized women with breast cancer were excluded from the study. One experienced occupational therapist conducted the interviews by asking all significant questions and exploring issues that needed clarification or where the participant wished to add additional information based on a semi-structured interview guide. We also interviewed specialists with at least five years of experience treating breast cancer patients. We aimed to know the definition of functioning and the area of functioning in which the patients would have a problem based on the experience of therapists and physicians who treated patients with BC. The participants were interviewed in person or by phone for 45 to 60 minutes from November 2020 to April 2021. Most interviews (n = 35) were conducted remotely due to restrictions from the recent pandemic (COVID-19). (Table 1)

Interview guide:

Sample of questions in the interview guide for patients

The following questions guided the interview (this is a translation from Persian; probes were dependent on responses).

1) "Can you tell me how your life has been affected since you experienced the disease and treatment?

2)What actions can you not do during the day, or what actions make you feel uncomfortable? Alternatively, what actions make you feel most irritated?"

3) What factors can help you cope better with your condition? Or what are the factors that make you perform better? "Or what factors are making your functional condition worse?"

4) What factors hold back your progress in doing your actions? Or what factors stop you from doing your actions better?

Analysis of data

Data analysis was conducted in three main phases.

Phase one: thematic analysis

The recorded interviews were transcribed and qualitatively analyzed using thematic analysis within an interpretive description approach. Thematic analysis was used to help us identify, categorize, analyze the transcript, and report the themes concerning the study purpose (20). The analysis was performed based on the proposed six phases of thematic analysis described by Braun and Clarke (familiarizing with data, generating initial codes, searching for themes, reviewing themes, defining and naming themes, and producing the report)(19,21,22)

We did the repeated coding, classifying, and linkages with repeated immersion into the data several times. We also used the field notes on the data collection process and used them for reflection on the themes. Two authors read the transcribed interviews independently and assigned a descriptive phrase or code to the core concepts. After collecting a set of basic codes, they then compared the codes in a joint session until an agreement on them and their meanings. With the identification of new concepts, the codes were expanded or integrated into different conceptual categories, thereby creating the final main themes, subthemes, and initial codes.

Trustworthiness of findings

We did the concurrent data collection and analysis. We used constant comparative analysis to verify our data. To improve trustworthiness, we asked two authors to do the coding independently and multiple groups of patients and experts to assess questions and feedback before finalizing the paper. Any identified gap/ differences were discussed amongst the researchers until consensus was obtained (23).

Phase two: linking to ICF

The meaningful concepts (codes) extracted from the interviews were linked to categories of the ICF core set for breast cancer based on the modified ICF linking rules (24). Different viewpoints and categorizations of responses were considered in the linking process. Two authors implemented the initial link independently, and any disagreements were resolved by discussion and agreement in a joint session. A third reviewer consulted on the most appropriate category for persistent disagreement. The extracted meaningful concepts were linked to the second and third levels of the ICF codes. In the absence of an ICF category covering a specific aspect of a concept, that concept was linked to the "other specified" category; if little information existed for a concept to be assigned to an ICF category, it was linked to the unspecified category. If there were more than one meaning for a meaningful unit, it was linked to more than one ICF category. Concepts unrelated to the ICF were expressed in two ways. If a concept was not sufficiently defined to decide on its belonging to an ICF category, it was expressed as 'nd' (non-definable). If the ICF did not represent a concept, it was labelled 'nc' (not covered) (Rule 10). If a meaningful concept was not covered by the ICF categories but was defined explicitly as personal factors by the ICF, that concept was designated as 'pf' (24).

The ICF linkage was calculated based on the recommendation formula; we calculate absolute linkage to know the percentage of items from a measure that could be linked to ICF codes (Number of items linked to a code (s) appearing in the Core Set /Total numbers of the item in a measure ×100%)), Core Set Representation ((Number of unique ICF codes from the measure that appear in the Core Set/total number of the codes in coreset) ×100%), and Core Set Unique Disability Representation ((Number of unique ICF codes from the measure that appear in the Core Set/total number of the disability codes in core set) ×100%) (25).

Phase three: Classification Using IPF

We linked the contents of psychological functioning, theexperience of emotions or the impact of negative thinking, which were important for patients with the Item Perspective Classification(IPF) (23). The extracted meaningful concepts from the interviews were classified based on the guidelines proposed by Rosa(23). In the first step, the context of the meaningful concept was determined, and the type of appraisal presented with the concept (rational or emotional) was identified. Extracted concepts were classified as either "emotional" or "rational" appraisals(26). "Emotional" appraisals (E) were used when the concept was related to the patient's emotions or feelings at present time. Any inquiries into emotions/feelings that have occurred in the past or “in general” were classified as rational appraisals (R) since they require retrieval of memories of previous psychological states.

At the second step, we identified the concept domains represented in extracted meaningful concepts. Based on the IPF framework, four concept domains represent all subjective and objective evolutionary levels of reality that are amenable to human perception, namely inorganic (I), for example: " Does your chair have a proper armrest?:, biological (B), for example, "rate the level of your pain?," social (S), for example, "if the pain affected your social life?" or psychological (P), "do you feel depressed or feel less capable because of your pain?" (27).

In the final step, the relationships between two or more concepts presented within a meaningful concept were identified and described. We used the symbols to classify the nature of relationships, including interactive relationships '*’, no relationship, ''. Vague, unclear concepts were classified as 'open-ended' ('X').

Themes

The extracted results included a rich overview of the components of functional problems of breast cancer survivors and the factors that acted as facilitators and barriers to their functions, which were obtained from the interview with these women and specialists who had experience working with this group of patients. Based on the extracted results (849 initial codes), functioning in survivors of BC was described in 660 (78%) out of the initial codes. Nine subthemes were extracted which define factors creating functioning in BC patients, including factors related to impairment, factors related to physical function, factors related to mental function, factors related to social life, factors related to self-perception, factors related to emotional interactions with family and friends, factors related to the cost of treatment, factors related to the health system, and factors related to personal emotions. The extracted subthemes were further categorized into three main themes: a) body functioning (189, 29%), b) physical functioning (186, 28%), c) social functioning (108, 16%), and d) mental functioning (177, 27%). Other extracted factors were labelled as modifiers that could affect the level of function and categorized as personal, emotional, and environmental. (Table 2)

Table 2. Frequencies of Main themes, and initial codes (core codes) of functioning in patients and experts

Themes		Meaningful concepts	Frequency Patients	Frequency experts
impairment (189) [patient (16), experts (21) ]	pain and sensation (74) [patient (14), experts (18)]	Pain at rest in the upper limb of the affected side	6	16
		Pain in the upper limb of the affected side during daily activities	11	5
		Sense of numbness at rest in the upper limb of the affected side	2	4
		Sense of numbness in the upper limb of the affected side during daily activities	4	1
		Sense of stretching or prickling in the upper limb of the affected side during daily activities	11	1
		Sense of heaviness in the upper limb of the affected side during daily activities	1	6
		Tingling sensation in the upper limb of the affected side	3	3
		total	38	36
	Fatigue (57) [patient (14), experts (17)]	Decreased physical ability and fatigue during daily activities	12	17
		Decreased physical ability and fatigue during work activities	5	8
		Performing repetitive and long-term movement activities with the upper limb of the shoulder and elbow (such as reaching hands behind the neck and the back, closing buttons on the back of the neck, underwear tie)	3	0
		Performing long-term movements with fingers and wrists (e.g., writing, drawing, using a knife to chop vegetables or making salads, grating, long-time holding of books/cellphones)	7	5
		total	27	30
	Lymph and skin (44) [patient (12), experts (18) ]	Skin problems such as skin discoloration, darkening, dryness, thinness, tightness, and changes in nails	8	10
	Lymph and skin (44) [patient (12), experts (18) ]	Swelling in the upper limb and torso of the affected side (edema)	8	18
		total	16	28
	Hearth and respiratory (14) [patient (8), experts (5)]	Respiratory problems such as dyspnea and severe coughs	0	2
		Heart problems	8	4
		total	8	6
physical function (186) [patient (16), experts (22) ]	Sexual (38) [patient (7), experts (15) ]	Difficulty with weight maintenance (obesity and overweight)	4	3
		Problems with sexual function	3	11
		Problems with menstrual functions	2	9
		Problems with pregnancy function (sterility /infertility)	1	5
		total	10	28
	Overhead functioning (29) [patient (10), experts (13) ]	limited ROM of the shoulder	1	13
		Performing overhead movements, such as raising hands above the shoulder level (picking items from the top floor of refrigerators, kitchen cabinets)	9	6
		total	10	19
	Manipulation and pushing (10) [patient (7), experts (1) ]	Pressing tough/hard things with the affected hand such as pushing the door	1	0
		Screwing lids on stiff bottles	2	0
		Grasping fine/small objects with hands	1	0
		Squeezing and pressing clothes, cleaning clothes	5	1
		total	9	1
	Weightlifting (27) [patient (14), experts (13) ]	Lifting and carrying heavy equipment and loads (e.g. heavy shopping bags, carrying bags on the shoulder, moving heavy pots while sieving rice)	14	13
	Self-care, ADL and IADL (73) [patient (16), experts (16) ]	Dressing/undressing clothes	8	7
		Personal hygiene (e.g. bathing or showering, washing hair, cleaning after defecation, make-up)	8	2
		Doing household chores (e.g., dusting and cleaning the house, washing dishes, making the bed, sweeping)	15	13
		Cooking	3	6
		Caring for others (e.g., hugging babies, caring for children and others)	3	8
		total	37	36
	Sleep (9) [patient (6), experts (3) ]	Sleeping on the affected side	6	3
mental functioning (10) [patient (2), experts (5)]	Cognition (10)	attention and concentration problems in doing daily activities	1	4
	Cognition (10)	Problems with memory and amnesia in doing daily tasks	1	4
		total	2	8
Emotional function (167) [patient (15), experts (21) ]		Sense of losing the beauty of appearance such as muddled appearance and unfitting appearance/clothing	3	3
		One's lifestyle	11	8
		One's viewpoints and attitudes toward disease and life	2	3
		Levels of education and literacy	0	6
		Sense of distress and sadness	11	15
		Sense of loneliness	2	1
		Sense of fear and fear of relapse	9	13
		Concern about the disease impact on personal life	1	11
		Feeling worried about the future of the disease	3	14
		Feeling worried about the future	5	4
		Feel guilty	1	2
		Sense of burdensomeness and inattention in the family	0	3
		Lack of motivation and impatience	2	4
		Sense of hopelessness about the future	2	6
		Sense of disability and disablement	5	5
		Sense of failure in performing tasks and duties	1	0
		Irritability/angriness and losing temper	3	0
		Non-expression of feelings and emotions/not talking about one's feelings and emotions toward people and daily life events	2	4
		Mental fatigue	0	2
		total	50	87
Social functioning (108) [patient (15), experts (20)]	Driving (1) [patient (1 )]	Driving	1	0
	Social life and interaction/communication (59) [patient (13), experts (19)]	Participation in gatherings such as attending meetings, religious ceremonies, friendly and formal parties, attending workplace	1	5
		Spousal relationships such as intimate and sexual relationships	5	15
		Communication with family members such as father, mother, sister, brother, and children	0	6
		Communication with other people such as friends, relatives, acquaintances, and colleagues	9	10
		Communication with recovered individuals and peer groups	3	4
		Going out of the house	0	1
		total	18	41
	Work (18) [patient (5), experts (13) ]	Job-related matters	5	13
	Leisure and sport (20) [patient (8), experts (7) ]	Light sports activities (such as walking)	2	2
		Heavy sports activities (such as yoga, aerobics, swimming, badminton)	2	3
		Doing finger-related leisure activities (e.g., writing, sewing, knitting, working with cellphones, playing musical instruments)	6	5
		total	10	10
	Religious (10) [patient (7), experts (3)]	Patients' religious beliefs	7	3
Modifiers: Personal factors=90
Factor related to self-perception (37) [patient (4), experts (19)]	Body scheme (17)	Changes in the appearance of the breast and hand by mastectomy and swelling of the affected side	1	16
		Decreased self-confidence	1	4
		Problems with body image	4	11
		total	6	31
Factor related to Emotional interactions with family and friends (53) [patient (12), experts (18) ]		Lack of emotional support from spouse, children, and family members such as father, mother, sister and brother	3	4
		Emotional support from relatives, acquaintances, friends and colleagues	2	0
		lack of help, accompaniment and support of spousal, children, and family members in daily activities	7	14
		Compassionate and sympathetic behaviors of companions	4	4
		Incorrect judgments of companions about one's disease	5	10
		total	21	32
Modifiers: environmental factors=99
Factors related to the cost of treatment (49) [patient (8), experts (18) ]		High costs of disease treatment	5	15
		inaccessibility to medicines from distribution centers such as pharmacies	5	2
		Non-coverage of treatment costs by health insurance firms	2	11
		Financial inability to provide assistive devices such as breast prostheses, bandages, and compression sleeves (use of support systems or donors to undertake treatment costs)	2	7
		total	14	35
Factor related to health system (50) [patient (9), experts (14)]		Insufficient information about the disease and its treatments from treatment team members	3	10
		Lack of support, understanding, and accompaniment of the patient treatment team	6	7
		Lack of psychological and palliative support to the patient during treatment	2	4
		Lack of support and accompaniment from employers, such as employers' understanding of the patient's disease	1	2
		Inaccessibility to disease-related educational programs and its treatments at hospitals and medical clinics such as group therapy programs, etc.	0	5
		Poor service quality at public hospitals	2	2
		Screening of healthy women by the health system	2	4
	total		16	34

Body functioning

The most common reported impairments that were problematic for patients in this study were pain, sensation (74,39%) and fatigue (57, 30% codes). Sixteen patients (P) and 21 experts (E) reported problems in pain, sensation, fatigue, lymph, skin, heart, and respiratory dysfunctions.

"I have pain in my axilla and side of the affected side" (P12), "I have severe pain in the scapula of the affected side "(P16)), ("Pain in the shoulder area, pain in the chest and back, pain in the arm, pain in the lateral part of the trunk and sides, pain in the axilla, neck pain due to the heaviness of the hand edema" (E11).

2. physical functioning

The most reported physical functioning problems were related to difficulty in performing self-care, ADL and IADL (73, 39% codes), sexual (38, 20% codes), overhead functioning (29, 16% codes), weightlifting (27, 14.5% codes), manipulation and pushing (10, 5% codes), and sleep (9, 5% codes).

The problems that patients mentioned in self-care, ADL and IADL, overhead functioning, weightlifting, manipulation and pushing, and sleep were directly related to the patient's impairment level, such as pain and sensation, fatigue, and lymph. Problems with Self-care, ADL, and IADL were more commonly reported codes raised by both groups of participants (16 patients and 16 experts). Among them, household chores (e.g., dusting and cleaning the house, washing dishes, making the bed, sweeping) received more complaints.

“I cannot clean and dust the house with the injured hand due to heaviness, edema and pressure on the hand” (P14). “By doing repetitive tasks such as sweeping, the hand becomes swollen” (E7) and “they are unable to do continuous housework “(E2).

"I am much slower in housework. I am not as hard as I used to be working and living; I cannot go up the stairs quickly, for example, I cannot do housework in a row; whatever I do, I must sit for a quarter to twenty minutes to find some energy to start the next work again" (P2).

Ever since I got sick, I have felt sad and sad about the future of my family life as I cannot support them anymore and I cannot do even my self-care; I think I have been depressed" (P13)" I'm sad that I cannot have the previous routine of my life (P12).

3. Social functioning

Most of the problems in this content were raised by 15 patients and 20 experts in different areas such as social life and interaction/communication (59, 55% codes), leisure and sport (20, 18.5% codes), work (18, 17% codes), religious (10, 9% codes) and driving (1, 1% codes).

Most of the problems mentioned by patients and experts indicated that the level of impairment and physical functions are the reason for having difficulties in this area. The most common problem with social life and interaction /communication with others was "Spousal relationships such as intimate and sexual relationships."

"Sex with my wife was interrupted because my body's ability and endurance were deficient; then, the menopausal symptoms bothered me a lot; the injections I was taking to disable the ovaries and uterus bothered me a lot." (P2). "Decreased sexual intercourse with the spouse and dissatisfaction with sexual activities due to a disorder in the body's appearance and hiding one's appearance from the spouse, discomfort in bed during sexual intercourse due to swelling of the hands and trunk" (E15).

4. Mental functioning

The functional problems mentioned by two patients and five experts in this study included problems with attention, concentration (5, 50% codes), memory and amnesia (5, 50% codes) in daily tasks. The content of mental functions indicates that breast cancer survivors have experienced different negative emotions such as a sense of loneliness, concern about the disease's impact on personal life, feeling worried about the future of the disease, Feel guilty, sense of hopelessness about the future, Etc. The relation between difficulty in performing ADL, IADL, and self-care with emotional problems was reciprocal. Patients reported negative emotions in response to their level of functioning in Self-care, ADL and IADL. They also expressed that they cannot perform their functional activities due to emotional problems.

Modifiers of function

We also extracted codes which were modifiers of functioning and categorized them into three themes: environmental, personal, and emotional factors.

2. Environmental factors

a. Factors related to the costs of treatment

Eight patients and 18 experts reported problems with the costs of the treatment. Concepts extracted from participants' conversations on this theme include the high cost of treatment (20, 41% codes), the lack of insurance coverage for some drugs (13, 26.5% codes), the difficult access to some drugs (7, 14% codes), the lack of the small number of support systems and charities in the community to pay for assistive devices Such as breast prostheses, bandages, and pressure gloves (9, 18% codes).

b. Factors related to health systems

Nine patients and 14 experts reported problems in the health systems. The most common problem in this area was "insufficient information about the disease and its treatments from treatment team members" and "lack of support, understanding, and accompaniment of the patient treatment team," with 13, 26% codes.

Concepts related to health systems in this study by breast cancer survivors and specialists mainly indicated deficiencies in providing psychological and palliative services, educational programs, and screening of healthy women. In many cases, there was also a poor understanding and support of the treatment team in informing patients, which could be an inhibitor in improving the performance of these women.

"Women are not trained to examine their breasts; if this is done, it will cause women to come sooner, and their disease condition will not worsen, and they will not have to have their breasts removed completely" (P8).

2. Personal and emotional factors

Factors related to personal emotions

Fifteen patients and 21 experts reported problems with personal emotions, and the most common problem in this area was categorized as "sense of distress and sadness (26, 19% codes)" and " sense of fear and fear of relapse (22, 16% codes)".

Breast cancer survivors have experienced different negative emotions such as a sense of loneliness, concern about the disease's impact on personal life, feeling worried about the future of the disease, feeling guilty, and hopelessness about the future. The most common negative emotions that patients experienced included a sense of distress and sadness and a sense of fear and fear of relapse. They stated that these negative emotions are related to their level of function in performing self-care, ADL and IADL.

"I am sad that I cannot have the previous routine of my life(P12). Ever since I got sick, I have felt sad and sad about the future of my family life; I think I have been depressed" (P13). (The patient becomes depressed and isolated due to a change in their breast appearance and edema of the hand., they feel uncomfortable with the tightness of the clothes she has already worn with the swelling created in her hand"(E9).

"I am always stressed by the negative impact of chemotherapy and cancer" (P12). "I am afraid of disease and death" (P8))" Patients have stress and anxiety due to not returning to normal life activities (whether housework or work activities) and are also afraid of leaving their spouse and remarrying" (E15).

Factor related to self-perception

Four patients and 19 experts reported problems in self-perception, and the most common complaint in this area was body scheme (17, 46% codes). This topic included changes in appearance resulting from the removal of all or part of the breast and the swelling caused by the removal of lymph nodes, which disturbed the person's mental image. Self-perception was mentioned as a barrier to communicating with others in social life.

"I was afraid of the bad reaction of my children and my wife to the mutilation and removal of my breast" (P2)" Young women felt the loss of physical beauty and acceptance of breast resection "(S16).

Factors related to emotional interactions with family and friends

Twelve patients and 18 experts reported problems in emotional interactions with family and friends that forced them to avoid socialization and participation. The most common problem in this area was a lack of help, accompaniment and support from spouses, children, and family members in daily activities (21, 40% codes). The content expressed by the participants here was emotional interactions, help and companionship of people who interacted with the individual in the family and community environment. However, some patients reported experiencing a bad feeling about incorrect judgments about their capability and receiving extreme support or compassion. In this theme, the most common concept mentioned by patients and specialists was help, accompaniment and support of spousal, children, and family members in daily activities.

"Sometime after my illness, my wife refused to accompany me, and I even paid for the hospital myself, "everyone around me was kind of tired, or I finally gave up, and after two years, I was left alone. " I need someone to accompany me for chemotherapy. I called my relatives to be by my side, but they refused, so I am alone for about 7 or 8 sessions now”. (P2).

We also extracted some extra 30, 3.5% codes that could not be classified as functioning directly; however, they could be considered facilitators or barriers to functioning in BC survivors. Most of the extracted codes were related to coping strategies (19, 63% codes), level of literacy and education (6, 20% codes), and personal views and attitudes toward illness and life (5, 17% codes).

For example, some patients stated that their perception of life had changed for the better:

"My outlook on life and the world has changed since I became ill, and I try to enjoy my life more and increase my satisfaction with life and the present" (P7), or another patient would say, "After the illness, I try to enjoy more of my free time with my family" (P12).

Experts also indicated that individuals' literacy levels sometimes helped them benefit from educational facilities (brochures or YouTube links). However, interviews revealed that patients with lower literacy levels were better able to cope with their illness. In contrast, patients with higher literacy levels were more stressed. Some patients indicated that they tried to change their lifestyle to cope with the illness. They increased the time in their leisure time and tried to have healthy eating and practice doing their self-care independently.

"I think doing my self-care can help me a lot. Everyone should take care of themselves so that one does not take care of oneself and cannot expect from others. For example, I now regularly take my medicine, regularly check with my doctor, or communicate and reach Completely to the sport that I have at home" (P1)" After the illness, my compatibility has improved to cope with the appearance of my body. I listen to music to increase my peace of mind and reduce my mental distress" (P16).

Linking to ICF

Extracted meaningful concepts from the interview with breast cancer survivors

Of the 338 concepts extracted from patient interviews, 146 (43%) concepts were linked with the ICF Body function and structure, 121(36%) to activity and participation, 44(13%) to environmental factors and 11 (3%) to personal factors category.

Patients reported difficulty in different areas of body function such as were Chapter B1: mental function (44, 30%), Chapter B7: Neuromusculoskeletal and movement-related functions (25, 17%), Chapter B4: Functions of the cardiovascular, hematological, immunological, and respiratory systems (33, 23%), and Chapter B2: Sensory functions and Pain (23, 16%). The highest frequency of reported functional problems was related to b152 Emotional functions (25, 17%), b2801 Pain in body parts, and b455 Exercise tolerance functions (17, 12%).

Patients reported difficulties in D4: Mobility 37 (30.5%), D5: Self-care (16,13 %) , D6: Domestic life (21 ,17%), D7: Interpersonal interactions and relationships (17, 14%), D8: Major life areas(12, 10%) and D9: Community, social and civic life (18,15%). The majority of the raised problem in the activity and participation area were Doing housework (d640-15,12%) and lifting and carrying objects (d430-14, 11.5%).

Some of the raised difficulty areas from the patient’s view could not be linked with any codes and categories of the core set for breast cancer. However, they were linked to eight codes from body function and 14 codes from activity and participation (Table 3).

The other 27 concepts could not be linked to the ICF. The content of the meaningful concepts, which could not be assigned to the most precise ICF categories, were classified into three concepts based on the updated linking. The concept refers to mental health (nd-mh : Sense of losing the beauty of appearance, Sense of loneliness, feeling guilty, sense of hopelessness about the future, Sense of disability and disablement and Sense of failure in performing tasks and duties) and concepts that cannot be covered by the ICF (nc; non-coverage of treatment costs by health insurance firms), and the concepts referred to personal factors(one's lifestyle) (Table 3)

Table 3 - ICF categories and IPC linked to the meaningful concepts were obtained from the interview with breast cancer survivors

Meaningful Concepts	Number of codes	ICF Core Set for breast cancer	General ICF	IPF code
Body Functions: 146 [patient (16)]
B1: Mental functions: 44 [patient (16)]
Decreased self-confidence :	1	b126 Temperament and personality functions		E_P
Lack of motivation and impatience :	2	b130 energy and drive functions		E_ P
attention and concentration problems in doing daily activities	1		b140 Attention functions	R_B^*B
Problems with memory and amnesia in doing daily tasks	1		b144 Memory functions	R_ B^*B
Sense of distress and sadness:	11	b152 Emotional functions		E_ P
Sense of fear and fear of relapse:	9	b152 Emotional functions		E_ P
Irritability/angriness and losing temper:	3	b152 Emotional functions		E_P
Non-expression of feelings and emotions/not talking about one's feelings and emotions toward people and daily life events:	2	b152 Emotional functions		E_P
Concern about the disease impact on personal life	1		b160 Thought functions	E_ P
Feeling worried about the future of the disease	3		b160 Thought functions	E_ P
Feeling worried about the future	5		b160 Thought functions	E_ P
Changes in the appearance of the breast and hand by mastectomy and swelling of the affected side	1	b1801 Body image		R_B
Problems with body image	4	b1801 Body image		R_ P
B2: Sensory functions and pain: 23 [patient (14)]
Sense of numbness at rest in the upper limb of the affected side	2	b265 Touch function		R_B
Sense of numbness in the upper limb of the affected side during daily activities	4	b265 Touch function		R_ B^*B
Pain at rest in the upper limb of the affected side	6	b2801 Pain in body parts		R _ B
Pain in the upper limb of the affected side during daily activities	11	b2801 Pain in body parts		R_B^*B
B4: Functions of the cardiovascular, haematological, immunological and respiratory systems: 33 [patient (16)]
Heart problems	8		b410 Heart functions	R_ B
Swelling in the upper limb and torso of the affected side (edema)	8	b4353 Functions of lymphatic vessels		R_ B
Decreased physical ability and fatigue during daily activities	12	b455 Exercise tolerance functions	b4552 Fatiguability	R_ B^*B
Decreased physical ability and fatigue during work activities	5	b455 Exercise tolerance functions	b 4552 Fatiguability	R_B^*S
B5: Functions of the digestive, metabolic and endocrine systems: 4 [patient (4)]
Difficulty with weight maintenance (obesity and overweight)	4	b530 Weight maintenance functions		R_ B
B6: Genitourinary and reproductive functions: 6 [patient (6)]
Problems with sexual function	3	b640 Sexual functions		R_ B
Problems with menstrual functions	2	b650 Menstruation functions		R_ B
Problems with pregnancy function (sterility /infertility)	1	b660 Procreation functions		R_ B
B7: Neuromusculoskeletal and movement-related functions: 25 [patient (12)]
limited ROM of the shoulder	1	b710 Mobility of joint functions		R_B
Performing overhead movements, such as raising hands above the shoulder level (picking items from the top floor of refrigerators, kitchen cabinets)	9	b710 Mobility of joint functions		R_B
Performing repetitive and long-term movement activities with the upper limb of the shoulder and elbow (such as reaching hands behind the neck and the back, closing buttons on the back of the neck, underwear tie)	3	b710 Mobility of joint functions		R_B
Sense of heaviness in the upper limb of the affected side during daily activities	1	b780 Sensations related to muscles and movement functions		R_ B^*B
Sense of stretching or prickling in the upper limb of the affected side during daily activities	11		b7808 Sensations related to muscles and movement functions, other specified	R_ B^*B
B8: Functions of the skin and related structures: 11 [patient (9)]
Skin problems such as skin discoloration, darkening, dryness, thinness, tightness, and changes in nails	8	b810 Protective functions of the skin	b860 Functions of nails, b849 Functions of the skin, other specified and unspecified	R_ B
Tingling sensation in the upper limb of the affected side	3	b840 Sensation related to the skin		R_B
Activity & Participation: 121 [patient (16)]
D4: Mobility: 37 [patient (15)]
Sleeping on the affected side	6		d415 Maintaining a body position	R_B
Lifting and carrying heavy equipment and loads (e.g. heavy shopping bags, carrying bags on the shoulder, moving heavy pots while sieving rice)	14	d430 Lifting and carrying objects		R_ B
Performing long-term movements with fingers and wrists (e.g. writing, drawing, using a knife to chopping vegetables or making salads, grating, long-time holding of books/cellphones)	7		d440 Fine hand use	R_ B
Grasping fine/small objects with hands	1		d 4402 Manipulating, d4401 Grasping	R_ B
Pressing tough/hard things with the affected hand such as pushing the door	1	d445 Hand and arm use	d4451 Pushing	R_B
Screwing lids on stiff bottles	2	d445Hand and arm use	d 4453 Turning or twisting the hands or arms	R_ B
Squeezing and pressing clothes, cleaning clothes	5	d445Hand and arm use	d4453 Turning or twisting the hands or arms	R_ B
Driving	1		d475 Driving	R_S
D5: Self-care: 16 [patient (10)]
Personal hygiene (e.g. bathing or showering, washing hair, cleaning after defecation, make-up)	8	d510 Washing oneself, d520 Caring for body parts		R_B
Dressing/undressing clothes	8	d540 Dressing		R_B
D6: Domestic life:21 [patient (15)]
Cooking	3	d630 Preparing meals		R_B
Doing household chores (e.g., dusting and cleaning the house, washing dishes, making the bed, sweeping)	15	d640 Doing housework		R_B
Caring for others (e.g., hugging babies, caring for children and others)	3	d660 Assisting others		R_S
D7: Interpersonal interactions and relationships: 17 [patient (13)]
Communication with other people such as friends, relatives, acquaintances, and colleagues	9	d750 Informal social relationships	d740 Formal relationships	R_ S
Communication with recovered individuals and peer groups	3		d 7504 Informal relationships with peers	R_ S
Spousal relationships such as intimate and sexual relationships	5	d770 Intimate relationships		R_B^*S
D8: Major life areas: 12 [patient (7)]
Job-related matters	5	d 850 Remunerative employment		R_B^*S
High costs of disease treatment	5		d 870 Economic self-sufficiency	R_I
Financial inability to provide assistive devices such as breast prostheses, bandages, and compression sleeves (use of support systems or donors to undertake treatment costs)	2		d 870 Economic self-sufficiency	R_ I
D9: Community, social and civic life: 18 [patient (10)]
Participation in gatherings such as attending meetings, religious ceremonies, friendly and formal parties, attending workplace	1		d910 Community life	R_S
Light sports activities (such as walking)	2	d920 Recreation and leisure	d9201 Sports, d450 Walking	R_B^*S
Heavy sports activities (such as yoga, aerobics, swimming, badminton)	2	d920 Recreation and leisure	d9201 Sports	R_B^*S
Doing finger-related leisure activities (e.g., writing, sewing, knitting, working with cellphones, playing musical instruments)	6	d920 Recreation and leisure	d440 Fine hand use	R_B
Patients' religious beliefs	7		d 930 Religion and spirituality	R_P
Environmental Factors: 44 [patient (13)]
E1: Products and technology: 5 [patient (5)]
inaccessibility to medicines from distribution centers such as pharmacies	5	e110 Products or substances for personal consumption		R_ I
E3: Support and relationships: 24 [patient (12)]
Lack of emotional support from spouse, children, and family members such as father, mother, sister and brother	3	e 310 Immediate family		E_P^*S
Emotional support from relatives, acquaintances, friends and colleagues	2	e325 Acquaintances, peers, colleagues, neighbors, and community members, e320 Friends		E_ P^*S
Lack of support and accompaniment from employers, such as employers' understanding of the patient's disease	1		e330 People in positions of authority	R_ S
Lack of support, understanding, and accompaniment of the patient treatment team	6	e 340 Personal care providers and personal assistants, e 355 Health professionals		R_S
Lack of psychological and palliative support to the patient during treatment	2	e 340 Personal care providers and personal assistants, e 355 Health professionals		E_P^*S
Insufficient information about the disease and its treatments from treatment team members:	3	e355 Health professionals		R_S
lack of help, accompaniment and support of spousal, children, and family members in daily activities	7		e398 Support and relationships, other specified	R_S
E4: Attitudes: 11 [patient (7)]
Compassionate and sympathetic behaviors of companions	4	e425 Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members		E_ P^*S
Incorrect judgments of companions about one's disease	5	e425 Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members		E_ P^*S
One's viewpoints and attitudes toward disease and life	2		e498 Attitudes, other specified	R_ X
E5: Services, systems and policies: 4 [patient (3)]
Poor service quality at public hospitals	2	e580 Health services, systems, and policies		R_I
Screening of healthy women by the health system	2	e580 Health services, systems, and policies		R_ I
Personal Factors:11 [patient (11)]
One's lifestyle	11	pf	pf	R_ X
Nd-mh: 14 [patient (7)]
Sense of losing the beauty of appearance such as muddled appearance and unfitting appearance/clothing	3	nd-mh	nd-mh	E_ B^*P
Sense of loneliness	2	nd-mh	nd-mh	E_ P
Feel guilty	1	nd-mh	nd-mh	E_ P
Sense of hopelessness about the future	2	nd-mh	nd-mh	E_ P
Sense of disability and disablement	5	nd-mh	nd-mh	E_ B^*P
Sense of failure in performing tasks and duties	1	nd-mh	nd-mh	E_ B^*P
Nc : 2 [patient (2)]
Non-coverage of treatment costs by health insurance firms	2	nc	nc	R_ I

Extracted meaningful concepts from the interview with specialists

Of the 511 concepts extracted from specialists’ interviews, 246 (48%) concepts were linked with the ICF Body function and structure, 147 (29%) to activity and participation, 71 (14%) to environmental factors and 14 (3%) to personal factors category. Specialists reported difficulty in different areas of body function such as were Chapter B1: mental function (104 ,42%), Chapter B7: Neuromusculoskeletal and movement-related functions (26, 10 %), Chapter B4: Functions of the cardiovascular, hematological, immunological, and respiratory systems (49, 20%), Chapter B2: Sensory functions and Pain (26 ,10 %), and Chapter B6: Genitourinary and reproductive functions (25 ,10%). The highest frequency of reported functional problems was related to b152 Emotional functions (32 ,13%), b160 Thought functions (29 ,12%), b1801 Body image (27,11%), b455 Exercise tolerance functions (25 ,10%), and b2801 Pain in body parts 21 (8.5%).

Specialists reported difficulties in D4: Mobility 22 (15%) , D5: Self-care (9, 6 %) , D6: Domestic life (28,19%), D7: Interpersonal interactions and relationships (35, 24%), D8: Major life areas(35, 24%) and D9: Community, social and civic life(18, 12%).The majority of raised problem in activity and participation area were Economic self-sufficiency (d 870 -22 ,15%), Intimate relationships (d770- 15,10%), Lifting and carrying objects with (d430- 13, 9%), Doing housework (d640-13 ,9%) and Remunerative employment (d850- 13, 9%)

Some of the raised difficulty areas from the specialists’ view could not be linked with any cedes and categories of the core set for breast cancer. However, they were linked to nine codes from body function and ten codes from activity and participation (Table 4).

Table 4 - ICF categories and IPC linked to the meaningful concepts were obtained from the interview with medical specialist

Meaningful Concepts		ICF Core Set for breast cancer	General ICF	IPF code
Body Functions: 246 [specialists (22) ]
B1: Mental functions:104 [specialists (22) ]
Decreased self-confidence	4	b126 Temperament and personality functions		E_P
Lack of motivation and impatience	4	b130 energy and drive functions		E_ P
attention and concentration problems in doing daily activities	4		b140 Attention functions	R_B^*B
Problems with memory and amnesia in doing daily tasks	4		b144 Memory functions	R_ B^*B
Sense of distress and sadness	15	b152 Emotional functions		E_ P
Sense of fear and fear of relapse	13	b152 Emotional functions		E_ P
Non-expression of feelings and emotions/not talking about one's feelings and emotions toward people and daily life events	4	b152 Emotional functions		E_P
Concern about the disease impact on personal life	11		b160 Thought functions	E_ P
Feeling worried about the future of the disease	14		b160 Thought functions	E_ P
Feeling worried about the future	4		b160 Thought functions	E_ P
Changes in the appearance of the breast and hand by mastectomy and swelling of the affected side	16	b1801 Body image		R_B
Problems with body image	11	b1801 Body image		R_ P
B2: Sensory functions and pain: 26 [specialists (18) ]
Sense of numbness at rest in the upper limb of the affected side	4	b265 Touch function		R_B
Sense of numbness in the upper limb of the affected side during daily activities	1	b265 Touch function		R_ B^*B
Pain at rest in the upper limb of the affected side	16	b2801 Pain in body parts		R _ B
Pain in the upper limb of the affected side during daily activities	5	b2801 Pain in body parts		R_B^*B
B4: Functions of the cardiovascular, haematological, immunological and respiratory systems: 49 [specialists (21) ]
Heart problems	4		b410 Heart functions	R_ B
Swelling in the upper limb and torso of the affected side (edema)	18	b4353 Functions of lymphatic vessels		R_ B
Respiratory problems such as dyspnea and severe coughs	2		b440 Respiration functions	R_ B
Decreased physical ability and fatigue during daily activities	17	b455 Exercise tolerance functions	b4552 Fatiguability	R_ B^*B
Decreased physical ability and fatigue during work activities	8	b455 Exercise tolerance functions	b 4552 Fatiguability	R_B^*S
B5: Functions of the digestive, metabolic and endocrine systems: 3 [specialists (3) ]
Difficulty with weight maintenance (obesity and overweight)	3	b530 Weight maintenance functions		R_ B
B6: Genitourinary and reproductive functions: 25 [specialists (15) ]
Problems with sexual function	11	b640 Sexual functions		R_ B
Problems with menstrual functions	9	b650 Menstruation functions		R_ B
Problems with pregnancy function (sterility /infertility)	5	b660 Procreation functions		R_ B
B7: Neuromusculoskeletal and movement-related functions: 26 [specialists (13) ]
limited ROM of the shoulder	13	b710 Mobility of joint functions		R_B
Performing overhead movements, such as raising hands above the shoulder level (picking items from the top floor of refrigerators, kitchen cabinets)	6	b710 Mobility of joint functions		R_B
Sense of heaviness in the upper limb of the affected side during daily activities	6	b780 Sensations related to muscles and movement functions		R_ B^*B
Sense of stretching or prickling in the upper limb of the affected side during daily activities	1		b7808 Sensations related to muscles and movement functions, other specified	R_ B^*B
B8: Functions of the skin and related structures: 13 [specialists (11) ]
Skin problems such as skin discoloration, darkening, dryness, thinness, tightness, and changes in nails	10	b810 Protective functions of the skin	b860 Functions of nails, b849 Functions of the skin, other specified and unspecified	R_ B
Tingling sensation in the upper limb of the affected side	3	b840 Sensation related to the skin		R_B
Activity & Participation: 147 [specialists (21) ]
D4: Mobility: 22 [specialists (15) ]
Sleeping on the affected side	3		d415 Maintaining a body position	R_B
Lifting and carrying heavy equipment and loads (e.g. heavy shopping bags, carrying bags on the shoulder, moving heavy pots while sieving rice)	13	d430 Lifting and carrying objects		R_ B
Performing long-term movements with fingers and wrists (e.g. writing, drawing, using a knife to chopping vegetables or making salads, grating, long-time holding of books/cellphones)	5		d440 Fine hand use	R_ B
Squeezing and pressing clothes, cleaning clothes	1	d445Hand and arm use	d4453 Turning or twisting the hands or arms	R_ B
D5: Self-care: 9 [specialists (7) ]
Personal hygiene (e.g. bathing or showering, washing hair, cleaning after defecation, make-up)	2	d510 Washing oneself, d520 Caring for body parts		R_B
Dressing/undressing clothes	7	d540 Dressing		R_B
D6: Domestic life:28 [specialists (16) ]
Going out of the house	1	d 620 Acquisition of goods and services		R_B^*S
Cooking	6	d630 Preparing meals		R_B
Doing household chores (e.g., dusting and cleaning the house, washing dishes, making the bed, sweeping)	13	d640 Doing housework		R_B
Caring for others (e.g., hugging babies, caring for children and others)	8	d660 Assisting others		R_S
D7: Interpersonal interactions and relationships: 35 [specialists (17) ]
Communication with other people such as friends, relatives, acquaintances, and colleagues	10	d750 Informal social relationships	d740 Formal relationships	R_ S
Communication with recovered individuals and peer groups	4		d 7504 Informal relationships with peers	R_ S
Communication with family members such as father, mother, sister, brother, and children	6	d760 Family relationships		R_S
Spousal relationships such as intimate and sexual relationships	15	d770 Intimate relationships		R_B^*S
D8: Major life areas: 35 [specialists (19) ]
Job-related matters	13	d 850 Remunerative employment		R_B^*S
High costs of disease treatment	15		d 870 Economic self-sufficiency	R_I
Financial inability to provide assistive devices such as breast prostheses, bandages, and compression sleeves (use of support systems or donors to undertake treatment costs)	7		d 870 Economic self-sufficiency	R_ I
D9: Community, social and civic life:18 [specialists (11) ]
Participation in gatherings such as attending meetings, religious ceremonies, friendly and formal parties, attending workplace	5		d910 Community life	R_S
Light sports activities (such as walking)	2	d920 Recreation and leisure	d9201 Sports, d450 Walking	R_B^*S
Heavy sports activities (such as yoga, aerobics, swimming, badminton)	3	d920 Recreation and leisure	d9201 Sports	R_B^*S
Doing finger-related leisure activities (e.g., writing, sewing, knitting, working with cellphones, playing musical instruments)	5	d920 Recreation and leisure	d440 Fine hand use	R_B
Patients' religious beliefs	3		d 930 Religion and spirituality	R_P
Environmental Factors: 71 [specialists (19) ]
E1: Products and technology: 2 [specialists (2) ]
inaccessibility to medicines from distribution centers such as pharmacies	2	e110 Products or substances for personal consumption		R_ I
E3: Support and relationships:41 [specialists (19) ]
Lack of emotional support from spouse, children, and family members such as father, mother, sister and brother	4	e 310 Immediate family		E_P^*S
Lack of support and accompaniment from employers, such as employers' understanding of the patient's disease	2		e330 People in positions of authority	R_ S
Lack of support, understanding, and accompaniment of the patient treatment team	7	e 340 Personal care providers and personal assistants, e 355 Health professionals		R_S
Lack of psychological and palliative support to the patient during treatment	4	e 340 Personal care providers and personal assistants, e 355 Health professionals		E_P^*S
Insufficient information about the disease and its treatments from treatment team members	10	e355 Health professionals		R_S
lack of help, accompaniment and support of spousal, children, and family members in daily activities	14		e398 Support and relationships, other specified	R_S
E4: Attitudes: 17 [specialists (12) ]
Compassionate and sympathetic behaviors of companions	4	e425 Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members		E_ P^*S
Incorrect judgments of companions about one's disease	10	e425 Individual attitudes of acquaintances, peers, colleagues, neighbors, and community members		E_ P^*S
One's viewpoints and attitudes toward disease and life	3		e498 Attitudes, other specified	R_ X
E5: Services, systems and policies:11 [specialists (8) ]
Poor service quality at public hospitals	2	e580 Health services, systems, and policies		R_I
Screening of healthy women by the health system	4	e580 Health services, systems, and policies		R_ I
Inaccessibility to disease-related educational programs and its treatments at hospitals and medical clinics such as group therapy programs, etc.	5		e585 Education and training services, systems, and policies	R_ S
Personal Factors:14 [specialists (12) ]
One's lifestyle	8	pf	pf	R_ X
Levels of education and literacy	6	pf	pf	R_ X
Nd-mh: 22 [specialists (14) ]
Sense of losing the beauty of appearance such as muddled appearance and unfitting appearance/clothing	3	nd-mh	nd-mh	E_ B^*P
Sense of loneliness	1	nd-mh	nd-mh	E_ P
Feel guilty	2	nd-mh	nd-mh	E_ P
Sense of burdensomeness and inattention in the family	3	nd-mh	nd-mh	E_ P
Sense of hopelessness about the future	6	nd-mh	nd-mh	E_ P
Sense of disability and disablement	5	nd-mh	nd-mh	E_ B^*P
Mental fatigue	2	nd-mh	nd-mh	E_P
Nc : 11 [specialists (11) ]
Non-coverage of treatment costs by health insurance firms	11	nc	nc	R_ I

The other 47 concepts could not be linked to the ICF. The content of the meaningful concepts, which could not be assigned to the most precise ICF categories, were classified into three concepts based on the updated linking. The concept refers to mental health (nd-mh : Sense of losing the beauty of appearance, Sense of loneliness, feeling guilty, Sense of burdensomeness and inattention in the family, Sense of hopelessness about the future, Sense of disability and disablement, mental fatigue) and concepts that cannot be covered by the ICF (nc; non-coverage of treatment costs by health insurance firms), and the concepts referred to personal factors(one's lifestyle, levels of education and literacy) (Table 4).

In total, 592 meaningful concepts were linked with at least a comprehensive ICF Core Set category for BC, resulting in an absolute linkage score of 70%. Thirty-eight meaningful concepts were linked with a unique code comprehensive Core Set for BC, resulting in a unique linkage score of 4%. Concepts extracted in this study represented the Core Set for BC with 47% of coverage. The disability representation score for the extracted concepts was 61%.

Classification of the extracted meaningful concepts Based on IPF.

Two hundred seventy-one concepts from the interview with patients and 398 concepts extracted from the interview with specialists required rational appraisal. In contrast, 67 concepts from the interview with patients and 113 meaningful concepts extracted from the interview with the specialist required emotional appraisal.

Out of 271 Concepts from the interview with patients which required rational appraise, 195 concepts fell within the biological (B) domain, 34 concepts in the social (S) domain, 11 concepts in the psychological (P) domain, 18 concepts in the Inorganic (I) domain and 13 Concepts in open-ended (X) domain.41 concepts of the biological domain (B) were interactively related to this domain (B*B), and 19 other concepts of this domain were related to Social (S) domain (B*S).

Also, out of 67 concepts from interviews with patients which required emotional appraise, 58 concepts were classified in the domain of Psychology (P) and nine concepts in the domain of Biology (B). 9 concepts of the biological domain (B) were related to concepts of the psychological domain (P)(B*P), and 16 of the concepts of Psychological (P) were related to concepts of the social domain (S) (B*S).

Among the 398 meaningful concepts extracted that required rational appraise from interviews with experts, 255 concepts fell in the biological (B) domain, 71 concepts in the social (S) domain, 14 concepts in the psychological (P) domain, 41 Concepts in Inorganic (I) domain and 17 concepts in open-ended (X) domain. Thirty-eight concepts of the biological domain (B) were interactively related to this domain (B*B), and 42 other concepts of this domain were related to the social(S) domain (B*S).

Also, out of 113 concepts from the interview with experts that required emotional appraisal, 105 concepts were classified in the psychological domain (P) and eight in the biological domain (B). Eight concepts of the biological domain (B) were related to the concepts of the psychological domain (P) (B*P), and 22 of the concepts of Psychological (P) were related to the concepts of the social domain (S) (B*S).

The domains of concepts and their relationships are presented in Figures 3,4 and 5. In the patients’ chart, 60% of the extracted concepts were related to the biological (B) domain. Among the concepts appraised in the biological domain, 41% were classified as “No-related," which indicated no relationship between 41% of the biological concepts and other concepts. In contrast, 19% of the concepts appraised in the biological domain provided dynamic/interactive relationships with biological concepts(B*B) (12%), social concepts (B*S) (5%), and psychological concepts (2%).

In the expert’ chart, 51% of the extracted concepts were appraised to the biological (B) domain. Among the concepts appraised in the biological domain, 34.5% were classified as "No-related," which indicated no relationship between biological concepts and other concepts extracted from medical specialists. In contrast, 16.5% of concepts appraised in the biological domain provided dynamic/interactive relationships with biological concepts (7%), social concepts (8%), and psychological concepts (1.5%).

This study aimed to determine the areas of functioning in breast cancer survivors from the views of patients and their specialists based on the ICF core set for breast cancer. This study has demonstrated that persons with breast cancer report many different aspects of impairments in body functions and body structures, activity limitations, and participation restrictions, which are different from what experts define as functional problems in this population.

BC survivors experience problems and difficulties in response to changes in their body function and structure, affecting their level of function and interaction with society. Most of their problems were related to support, relationship, mental function, and mobility. Patients reported problems in mobility; however, the experts considered emotional problems as a cause for physical function limitations in breast cancer survivors. The results of linking the extracted meaning concepts with IPF (23) showed that patients had problems in the biological (B) domain, which required emotional appraisal and were categorized in the field of Psychology (P). Both groups indicated that problems in support and relationship and attitudes are the most prominent aspect of difficulties in this population.

This study identified problematic body function and structure, which affected the functioning of the patients. The research participants reported problems in different categories in the current version of the comprehensive core set. Besides, similar to previous studies, additional ICF categories were identified that are not currently included in the Comprehensive Core Set for breast cancer (10). Previous qualitative studies also reported similar problems extracted from interviews with patients and experts, such as reduced physical ability and fatigue during daily living and working activities (17), skin problems such as skin discoloration, darkening, dryness, thinness, tightness, and changes in nails (16,28), respiratory problems such as dyspnea and severe cough, and heart problems (14,16). Like previous studies, we also identified cognitive and emotional problems, such as attention and concentration problems, memory problems, and amnesia resulting from chemotherapy and hormonal therapy, affecting the patient's daily activities (14,16,17,29)

Patients and experts also raised difficulties in performing long-term movements with fingers and wrists, grasping fine/small objects by hands, maintaining a lying position on the affected side, and numbness, which is not included in the current core set for breast cancer. These problems were also identified and reported in previous qualitative studies on patients with BC (14–16). This difference between extracted concepts and categories of ICF core set for BC can be due to differences in participants in different studies. The ICF core set for BC was generated from interviewing women with BC in their acute phase after surgery; however, this study and some other validation studies of the ICF core set for BC interviewed patients in their chronic phases (10). In the chronic phase psychological and emotional problems also affected the level of function, however, they could not be linked with any ICF categories related to mental health and psychological problems.

The results of the current study showed the women with breast cancer experienced difficulties participating in gatherings such as attending meetings, religious ceremonies, friendly and formal parties, the workplace, and communicating with others, which are absent in the ICF core set for breast cancer. Other studies on cancer survivors have shown that this population faces challenges in sexual activity, sleep, leisure participation, exercise, and education which caused changes in their family roles, loss of relationships and the deterioration of their social roles (15,16,30). In contrast with other studies on BC patients, this study reported problems in their leisure and sport participation, which was not reported in patients in the early stages of the disease (14–16). Including patients in the late stages of their diseases increases the frequency of difficulties in their participation.

High costs of treatment, financial inability to provide assistive devices such as breast prostheses, bandages, and pressure sleeves, lack of support and accompaniment from employers, such as employers' understanding of the patient's disease", and "inaccessibility of disease-related training programs and its treatments at hospitals and treatment clinics such as group therapy programs were reported by experts and patients in this study. Some additional factors in environmental-personal factors categories were raised, which may act as barriers to functioning or assisting with everyday living. Among these, the codes "e330 People in positions of authority" and "d870 Economic self-sufficiency" were also identified in previous studies that validated the ICF core set for breast cancer (14–16).

In the interviews of most participants in this study, religious beliefs were considered a facilitating and influential factor in improving their disease and performing their functions, which was reported in previous studies (31). However, in some cases, they stated that cancer development caused the breakup of their beliefs and religious systems. The multitude of emotional concepts in this study suggests that emotional issues play a pivotal role in defining their functioning despite the treatment completion and the disease's stability, even after 2-3 years of initial treatment. Evidence shows that the BC survivors are concerned least with one emotional problem experienced as a fear of relapse, sense of sadness, emotional turmoil, identity problems, anxiety, and depression, which may be experienced years after diagnosis (28). In addition, treatment or disease progression can cause a range of neuropsychological consequences (e.g., anxiety, depression, sexual dysfunction, and body image disorder) (30,32,33).

Interpreting the functioning of patients with BC was not the same for patients and experts. There was an agreement between patients and specialists in reporting difficulties in body function and structure categories and the role of emotional and psychological factors. Both patients and experts mentioned support, relationship, and attitudes as the most influential factors in patient functions. However, there was a disagreement in the ICF activity and participation category. Patients raised problems in mobility, but the specialists reported that BC patients have problems in their interpersonal and social relationships.

Previous studies defined functioning as a problem in body function and structure via the lens of experts, physiotherapists, and oncologists (14,17). However, patients raised difficulties in other areas of function such as participation, social interaction, and emotional problem. However, patients raised difficulties in other areas of function, such as participation, social interaction, and emotional problem. The patient has reported results that provided valuable information about disorders in the mental, energy, sexual, and pain levels (34). The results reported by experts provided more valuable information about physical disorders (edema). Activity restrictions and participation restrictions can be obtained through self-report or observation reports.

Definition of functioning varies between different specialists and differs from the patients' view and interpretation. Difficulties in "body structures" categories are mainly limited to surgeons, medical oncologists, oncology nurses, and physiotherapists. On the other side, psychologists and social workers mainly raise problems in the "Activities and Participation" and the "environmental factors" section (35). In the early phase of the disease, the most important issues for patients are using bandage socks, the shape of movement-related structures and the support and relationships. However, experts consider problems in health services, systems, and policies; besides the immune system function, looking after one’s health, products, and technology for personal use in daily life, and dressing affect the function of BC survivors (36,37).

Our study interviewed both physicians and rehabilitation teams to define health and function in BC survivors comprehensively. Involving both health professionals and patients in this study elucidates the definition of health and function in BC survivors from the different perspectives

Strengths and limitations

One of the strengths of this study was that we sought the opinion of rehabilitation specialists of breast cancer patients about the functional problems of these patients, and it led to a deeper look at this issue. Also, the relationship of the produced content with the ICF and IPF classification led to a more comprehensive view of the functional problems of these patients. Therefore, identifying the different functional areas of breast cancer survivors based on the ICF classification from the perspective of patients and medical and rehabilitation specialists makes it possible to pay more attention to the major problems of this group of patients and to be more efficient in evaluation, prevention, and treatment strategies for these patients. One of the limitations of the present study is the impossibility of face-to-face interviews with the patients, which was not possible due to the conditions of the Covid-19 disease. It is suggested to investigate the functioning from the perspective of patients with other common cancers and in the acute phases of the disease in future studies.

Implications

The results of our study showed that most of the functional problems of breast cancer survivors are affected by their psychological and emotional factors, so interventions that help to improve the emotional problems of these patients can greatly improve the functional problems of breast cancer survivors.

The main functional problems of breast cancer survivors raised by the patients and experts participating in this study were difficulties in body functions. They indicated that the emotional and psychological issues determined the functioning of this group of patients. The patients indicated problems in their mobility, but the specialists reported that the significant issue in the BC survivor's functioning is in their interpersonal and social relationships. Also, in the environmental factors category, both participants mentioned support, relationship and attitudes as the most influential factors on patient functioning. Psychological and emotional factors define functioning in patients with BC. Different issues in the functioning of the BC survivors are not covered by the ICF core set for BC.

Ethics approval and consent to participate:

To begin sampling, the necessary permits, and an ethical code (IR.USWR.REC.1398.198) were obtained from the ethics committee at the University of Social Welfare and Rehabilitation Sciences. (Tehran) for the necessary coordination.

Consent to participate (include appropriate consent statements): Informed consent was obtained from all individual participants included in the study.

Consent for publication:

the patients could not be traced, and all the information are sufficiently anonymized.

Availability of data and materials

The data that support the findings of this study are available from the corresponding author upon reasonable request

Competing interests

The Author(s) declares(s) that there is no conflict of interest.

Funding

There is no Funding for this study

Authors' contributions

All authors contributed to the study conception and design. Material preparation, data collection and analysis were performed by [Farkhondeh Jamshidi, Maryam Farzad] and [Seyed Ali Hosseini]. The first draft of the manuscript was written by [Maryam Farzad and Farkhondeh Jamshidi] and all authors commented on previous versions of the manuscript. Methodology was designed and checked by [Joy C. MacDermid]. Data analysis was checked by [Mojtaba Habibi], [Maryam Farzad and Joy C. MacDermid] did the final review. All authors read and approved the final manuscript.

Acknowledgements

The authors acknowledge Dr. Joy MacDermid: Canada Research Chair and the Dr James Roth Chair (both in Musculoskeletal Measurement and Knowledge Translation) For supporting this research

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No competing interests reported.

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Characterization of functioning in breast cancer survivors: an interpretive descriptive analysis study based on the international classification of functioning, disability, and health (ICF) and the Item-Perspective Classification Framework

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