Participant characteristics
During January and February 2019, a total of six GPs from four general practices were recruited. They all agreed to participate. Four GPs were female and two were male. The age of the GPs ranged from 46 to 62 years (mean 52.8). All participating general practices were either partnership or group of solo practices. One practice was rural and three were in urban areas.
From January to March 2019 16 patients were asked to participate in the study. Two patients were excluded due to severe mental disorders. In total 14 patients were recruited (table 3). Ten patients were female and four were male. The age ranged from 20 to 58 years (mean 35). The BDS score ranged from 5 to 25 (mean 13.4) and the duration of symptoms from 2.5 to 108 months (9 years) (mean 29 months). Ten patients were employed, one was unemployed and three were on sick leave.
Table 3: Characteristics of participating patients in individual interviews (n=14)
Participant
|
Sex
|
Age
|
BDS score
(Max. 25)
|
P1
|
F
|
56
|
6
|
P2
|
F
|
42
|
15
|
P3
|
F
|
23
|
20
|
P4
|
M
|
27
|
8
|
P5
|
M
|
39
|
10
|
P6
|
F
|
37
|
7
|
P7
|
F
|
30
|
18
|
P8
|
F
|
58
|
11
|
P9
|
F
|
32
|
25
|
P10
|
F
|
20
|
19
|
P11
|
F
|
38
|
19
|
P12
|
F
|
37
|
16
|
P13
|
M
|
22
|
9
|
P14
|
M
|
33
|
5
|
The analysis identified 11 associated subthemes in the patient interviews and 7 subthemes in the GP interviews that were mapped into the three different COM-B components (table 4). In the following, we will describe the identified themes firstly in the patient interviews and secondly in the GP interviews.
Table 4: Themes from the patient and GP interviews mapped to capability, opportunity and motivation (COM-B model). Italics indicate the identified subthemes.
COM-B
Component
|
Theme (patients)
|
Theme (GPs)
|
Capability
|
Physical
A jungle of management strategies
|
Physical
Missing biomedical reassurance
|
Psychological
Understanding causes of PPS
Dealing with uncertainty
Timing in bringing PPS into play
|
Psychological
Dealing with uncertainty
Timing in bringing PPS into play
|
Opportunity
|
Physical
One consultation – one symptom
|
Physical
Lack of resources
|
Social
Shift in social roles due to PPS
The GP as a partner of discussion
|
Social
Cultural norms in the healthcare system
|
Motivation
|
Guidance from the GP
Need for hope
Tracking of symptoms
Easy access to self-help strategies
|
Fewer and beneficial consultations
Better prepared for consultations
|
Identified themes in the patient interviews
The patient interviews provided information about how the patients experienced PPS. The three domains in the COM-B model were used to identify patients’ needs in relation to self-management of their symptoms.
Theme 1: Capability
Capability was explored with patients to establish whether they felt they were physically and psychologically capable in self-management of their PPS.
Physical capability
A jungle of management strategies
The patients in general described a lack of skills and knowledge about how to manage their symptoms. They managed their symptoms in many different ways by making use of various offers in the community. Ten of the patients were seeing a psychologist due to psychological problems. One had tried metacognitive therapy. Some used a physiotherapist, a masseur, an osteopath, an acupuncturist or a chiropractor when they experienced muscular skeletal pain or symptoms. Others participated in mindfulness or yoga sessions or exercised in hot water.
They all described a jungle of information and asked for specific recommendations in relation to their own symptoms. They experienced that the guidance from GP wasn’t sufficient and did not meet their needs.
Psychological capability
Understanding causes of PPS
Psychological stress was often presented as a starting point for the symptoms. Stress could be caused by different circumstances in the participants’ life and be present for a long period of time with subsiding and recurring symptoms before PPS occurred, e.g. triggered by stress at work. However, when the symptoms occurred, the patients were unsure whether they were caused by stress or by physical factors. This was not further elaborated on in the consultation, and the patients were often referred to physical investigations at the hospital as described by this participant:
“It was a tough period for me. Small kids and busy at work. Suddenly, I felt like my legs could not carry me anymore. My GP referred me to the hospital, but the neurologist could not find any explanation. Later I realised myself the causality between stress and physical symptoms” (P6, female, aged 37)
Other patients described that their present symptoms might be a result of severe life events such as divorce (P5), childbirth (P12), car accident (P9), mid-life crisis (P8), establishing a family (P10, P14), unbalanced body (P2), concerns about the future (P4, P13) or stress in general (P6, P7). However, this was not broached during the consultation since the focus was on the physical aspect of the symptoms, which is described as an admission ticket to visit the GP. Participant 14 suggested that if the GP had been more focused on how he was doing in general instead of only on the stomach symptoms, it would have been more helpful in identifying the root cause of the symptoms:
“I was worried; a new-born baby, a new house, the symptoms from my stomach and being unsure whether I would be able to keep my work, you know, a jumble of thoughts. And then I think that my GP could have helped me if she had asked how I was actually doing instead of only focusing on the symptoms from my stomach” (P14, male, aged 33)
Dealing with uncertainty
Nine of the participants described uncertainty about whether a serious health condition might explain the symptoms and had thoughts about not being examined sufficiently. As this participant, a woman aged 32 with persistent low back pain, described:
“I really need some more physical investigations to be sure that nothing severe is wrong with me, and if they show that everything is fine, we can take it from there” (P9, female, aged 32)
If the patients were referred to specialists, the uncertainty was more about whether the doctor was thorough enough as described by this participant, a woman who was referred to a gynaecologist because of persistent symptoms from her stomach:
“I keep on thinking about whether the gynaecologist was thorough enough. He was very busy that day, and there were a lot of patients in the waiting room” (P11, female, aged 38).
Even though some of the patients believed that an underlying disease was not the cause of their symptoms, they required the physical investigations to be on the safe side prior to bringing other explanations such as stress into the consultations. To some patients, the more physical investigations, the better. Some of the patients described the ambivalence between being on the safe side and being worried when they were referred to physical investigations.
Timing in bringing PPS into play
When the patients were asked if they would like to participate in the study, the GP had explained about PPS, and for some patients it was the first time that they were introduced to this focus. This was an eye-opener for some of the patients, and they argued that it would have been helpful if PPS had been provided as an alternative explanation during concurrent physical investigations as suggested by this participant:
“My GP could have told me that of course we have to investigate whether it is a critical condition but maybe you should just learn to manage your symptoms and understand what might cause them” (P8, female, 58 years).
By bringing PPS into play earlier, the patients thought that they would be more willing to accept it as a reasonable explanation if physical investigations showed no findings and explanations. However, the timing was important since some of the patients argued that if the GP had introduced PPS as a possible cause the first time they showed up in the consultation and prior to physical investigations, they would not have accepted it, the reason being that the patients need to be sure that nothing serious is wrong with their body. As the same participant explained:
“If it had been introduced to me the first time I had symptoms from my heart in connection with my father's death of a heart attack, I do not think that I would have been prepared to accept it. At that time, I really needed to be sure that there was nothing wrong with my heart” (P8, female, aged 58)
Theme 2: Opportunity
Physical opportunity was explored with PPS patients to understand how the environment, resources and the locations in general practice affected their self-management of PPS. Social opportunity was explored to better understand how the cultural norms and the interpersonal relations affected the experience and self-management of PPS.
Physical opportunity
One consultation – one symptom
Visiting the GP with diffuse persistent symptoms was a challenge because of the time available in the consultation. A GP has in average 10 minutes for each patient, and the consultation is structured in a way so that the patient is supposed to address only one symptom per consultation. This was a challenge to patients with PPS since most of the patients explored diffuse, multiple and vague symptoms, which they found time-demanding to explain to their GP.
Social opportunity
Shift in social roles due to PPS
Patients described how their role in relation to their social network and families had changed after the symptoms started and described a feeling of guilt since they were not able to be the friend, mother/father or wife/husband they used to be.
“And I have to be there for my little son, but when I get dizzy, I have to go into the bedroom and relax, and I really think that it is hard to accept” (P14, male aged 33)
Some experienced social isolation since they only to a limited extent were able to participate in normal activities with their friends and families due to their symptoms.
Patients described how they had delegated different daily activities to other family members. As an example: P1 had asked her husband to prepare the meal when they invited guests, P2 asked her son to do the laundry, and P3 asked her boyfriend to do the cleaning.
The GP as a discussion partner
Overall, the patients voiced a good relationship with their GP, and five patients described that they used their GP as a discussion partner, like P2:
“It helps to visit my GP even though we only talk together” (P2, female, aged 42)
Some of the patients had a high degree of trust in their GP and trusted their ability to deal with a possible serious disease.
Theme 3: Motivation
Various factors were explored in relation to motivation for self-management among patients with PPS through an eHealth intervention. Central subthemes were as follows: (1) Guidance from the GP, (2) need for hope, (3) tracking of symptoms and (4) easy access to self-help strategies.
Guidance from the GP
Guidance in how to manage the symptoms, especially by the GP, was a key motivator for most of the patients. Patients felt that being offered an eHealth programme by their GP would increase their motivation for using it, but even though it was meant to be a self-help programme, patients wished the GP to guide their activity in the programme and follow up on their activity. Some patients found the follow-up important (P5, P8 and P10).
“I think it could be nice if you could get a sort of homework in an online programme and then your GP would follow up on whether you have done it or not” (P10, female, aged 20)
Overall, the patients underlined the importance of the self-help programme being a part of a continuity of care in collaboration with their GP rather than an alternative to GP visits.
Need for hope
Some patients described a feeling of hopelessness concerning PPS. They worried about their future and whether they would be able to work, take care of their family and whether the symptoms would persist for their entire life. They felt that the GP and other healthcare professionals focused overly on acceptance and learning to live with symptoms. P2 and P9 were directly told by their GP that the symptoms would be chronic. They described a need for seeing other patients with PPS and how they successfully managed their daily life as described by participant 3:
“It could be really helpful if you could get a feeling of not being alone by talking to or seeing others in the same situation and see how they manage their symptoms” (P3, female, aged 23)
Six patients suggested a forum where they could meet peers or some videos or case stories where the patients could see how people like themselves have managed PPS. It was important to the patients that the focus was on hope and positive experiences and strategies.
Tracking of symptoms
The patients found it very helpful to fill in the BDS checklist prior to the interviews, since it gave them a visible and precise overview of their symptoms. They suggested that the BDS checklist could be used to track their symptoms and provide them with a continuous status of their symptoms as described by P9:
“It is really difficult to tell how you are doing from day to day. Therefore, it is really helpful to have this checklist to monitor if you are going in the right direction” (P9, woman aged 32)
One patient (P6) suggested that the BDS checklist could be filled in prior to seeing their GP. This would help patients to better prepare for the consultation and participate in treatment decision-making. P5 stated that having the opportunity to fill in the BDS checklist at home could be a way of 'parking the symptoms in storage' and then take them out when visiting the GP. According to P5, this might help to not 'having to' sense the symptoms all the time out of fear of not being able to remember all the symptoms when presenting them to the GP.
Easy access to self-help strategies
Generally, the patients seemed motivated to self-manage their symptoms, but since PPS were not discussed as a reasonable explanation for the symptoms in the consultation, it was not easy to talk about self-management strategies with their GP. They proclaimed that being prescribed a self-help programme by their GP would be a safe and easy way to increase their self-management of PPS since they had a high degree of trust in their GP and thereby trust in the content in the program.
Identified themes in the GP interviews:
GP interviews provided information of PPS from the healthcare professionals' perspective in general practice. The three domains in the COM-B model were used to identify GP needs in relation to support patients with PPS to self-manage their symptoms.
Theme 1: Capability
Capability was explored with GPs to establish whether they felt they were physically and psychologically capable to support patients with PPS in self-management of their symptoms.
Physical capability
Missing biomedical reassurance
The six GPs participating in the study agreed that their roles as a GP are to diagnose, treat and reassure the patients in the consultation. During field studies, we observed that the GPs often conducted a simple screening of their patients in the consultation by listening to the heart and lungs with the stethoscope and making referrals to blood tests. However, when it came to patients with PPS, simple screening with the traditional biomedical methods did not reveal anything, and therefore the GPs were challenged when applying solely a biomedical approach to the patients. Hence, the patients were often referred to further tests at the hospital, even though the GP was quite sure that everything was normal:
“And I have to admit that sometimes you refer the patient to further tests at the hospital even though you have a clear expectation that everything is normal. But when blood test and scanning confirm this, the patient is reassured to a higher extent” (GP 2).
However, when symptoms persist, negative test results may prompt further healthcare seeking and an Odyssey of referrals and investigations. Most of the GPs were aware of this dilemma and reflected on the challenges of the missing biomedical reassurance to patients with PPS and claimed that they really needed a valid investigation and diagnostic tool to help the patients understand and accept the presence of PPS.
Psychological capability
Dealing with uncertainty
Diagnostic uncertainty is well known in general practice, and all the GPs described this problem. As an example, GP1 described that she always conducted some biomedical tests to be sure that the symptoms were not explained by any physical condition prior to introducing PPS as a possible diagnosis:
“I do not feel a huge degree of uncertainty when it comes to patients with PPS. However, we have to hedge our bets, because we are so afraid of missing severe illness in the patients. Therefore I always start with biomedical investigations” (GP1)
The GPs described different opinions about expressing the uncertainty to the patients. GP2 argued that she sometimes expressed her thoughts to the patients when she referred the patient to physical investigations at the hospital. She could sometimes tell the patient that she did not expect any critical findings and that the investigations were just conducted to be sure that no underlying disease was causing the symptoms. GP5 argued that he was dealing with the diagnostic uncertainty by sometimes expressing his uncertainty this way:
“When you have been a GP for almost 20 years, you have a certain experience and then you are coping with diagnostic uncertainty and you are also able to express your uncertainty to the patient. I often say to these patients that I am not sure what is causing your symptoms, but I am sure based on the findings that it is nothing severe” (GP5)
Timing in bringing PPS into play
All GPs agreed upon the importance of bringing PPS into play in the consultation as early as possible to avoid unnecessary investigations, and they described that they often considered alternative diagnoses early in the consultation when the patients presented symptoms which were not easily diagnosed. However, the GPs in general experienced difficulties in early introduction of their considerations and the concepts of PPS. Some described a barrier related to worries about how the patient would receive the message and whether the patient would accept the term PPS (GP1).
Theme 2: Opportunity
Physical opportunity was explored with the GPs to better understand how the environment, resources and the locations in general practice affected their support of patients with PPS in self-management of their symptoms. Social opportunity was explored to better understand how the cultural norms and the social cues affected the way GPs think about and manage patients with PPS.
Physical opportunity
Lack of resources
The GPs described that consultations with patients with PPS in general are time-consuming, and often patients present a variety of multiple, vague and diffuse symptoms not fitting into the construction of a consultation concentrating on one or few symptoms. Hence, the GPs described that they need more time and more concrete and easy accessible tools in the management of patients with PPS.
“I think that I omit patients with PPS because we have only few options to help these patients. And because of that I feel much more hesitant” (GP6)
Being a GP without effective tools to diagnose, treat and reassure patients with PPS was described as frustrating and time-consuming, since it often leads to less effective consultations as described by GP2:
“As a GP you really want to diagnose and reassure the patient satisfactorily, since they come in my practice with the expectation that I can tell them what is the matter with them and give them the needed treatment. However, when it comes to patients with PPS, I neither have the time nor the tools to help them sufficiently” (GP2)
GP6 described that he often manages patients with PPS by talking to them regularly and offers them continuous follow-up appointments in the absence of better treatment strategies:
“I think that the only way to manage those patients is to offer them some follow-up appointments and just talk with them” GP6
Social opportunity
Cultural norms in the healthcare system
GPs described a general negative attitude and feeling of fatigue towards patients with PPS in their colleagues. GP 4 described an attitude in the specialised healthcare system that patients with PPS are not their business and that the responsibility lies with the GPs. However, they do not collaborate with the GPs but start an Odyssey of biomedical investigations and treatments rather than bringing PPS into play. Furthermore, GP4 requested a better collaboration with the specialised departments at the hospitals and expressed a strong wish that the departments would bring PPS into play rather than keeping referring the patients to more examinations:
“I think it is a huge problem that we keep examining the patients just because none of us are able to say that there might not be a physical explanation of their symptoms. And instead the patients become more and more nervous because we all keep searching for an answer that is not there” (GP4)
Theme 3: Motivation
Various factors were explored in relation to motivation for supporting patients with PPS to self-manage their symptoms through eHealth. Central subthemes were as follows: (1) Fewer and more beneficial consultations and (2) better prepared consultations.
Fewer and more beneficial consultations
Combined with the frustration about the lack of time and missing diagnostic and management tools, the GPs wished that the patients would show up less frequently in the practice. The frequent consultations with no strategy generated a feeling of insufficiency in the GPs. Therefore, the GPs were highly motivated by the thought of having easy access to self-management tools for the patients, potentially resulting in fewer consultations.
The GPs agreed that an online self-help programme could be a great supplement to the face-to-face encounter with the patient.
Better prepared consultations
Some GPs mentioned that an online self-help programme with a symptom screening could result in the patient being better prepared for the consultation as the GPs could use the data provided by the programme as a starting point for the dialogue with the patient. In contrast, the GPs explained how they often use half of the consultation to create an overview of the patients’ symptoms. The GPs were generally worried about the increasing work load in general practice. Thus, they saw great potential in online symptom screening prior to the consultation allowing for more time for dialogue in the consultation, which was a high priority for the GPs. This was seen as improved quality of the consultation and thereby improved patient treatment.