A total of 11 women with pre-existing LTCs and 11 healthcare professionals took part in the semi-structured interviews. Women were a mean age of 32.9 years (SD 3.8, range 26-38 years). At the time of interviewing, five women were pregnant. Nine women reported that they had previously given birth, with six women reporting giving birth within the previous year. Six women reported living with more than one LTC. See Table 1 for the range of conditions reported.
Healthcare professional’s roles included a GP with a special interest in perinatal health and high-risk pregnancies, a specialist midwife for hypertension and renal disease, a diabetes specialist midwife, a midwife and infant feeding co-ordinator, three obstetricians, an obstetric physician (grouped under ‘Obstetrician/Obstetric Physician’ hereafter to protect anonymity), a consultant perinatal psychiatrist and two health visitors. All healthcare professionals reported extensive experience of working with pregnant and/or postpartum women living with pre-existing LTCs. Experience of using health or well-being measures varied among the sample. Six healthcare professionals reported no experience of using validated tools in clinical practice, whilst others reported some use of screening instruments. Screening tools reported included use of the Whooley questions for depression, the Patient Health Questionnaire (PHQ-2 and PHQ-9), the Edinburgh Postnatal Depression Scale (EPDS) and, the Generalized Anxiety Disorder scale (GAD-2 and GAD-7). The use of the Strengths and Difficulties Questionnaire for children and the UNICEF Breastfeeding Assessment reported by one health visitor, and one obstetrician/obstetric physician reported the use of her own ‘tailored’ questionnaire for her debrief clinic’s for women who experienced traumatic births.
Themes
Analysis identified five main themes: 1) Improving care, 2) Assessing outcomes, 3) Interpretation and application of data, 4) Engagement challenges and implementation and, 5) Women and healthcare professional alignment
Improving care
Women and healthcare professionals recognised the value of using health and wellbeing measures to improve care. Women welcomed the use of these measures within maternity care and thought they would be useful tools to help support them during consultations. Seven women felt that completing the exemplar questions shown to them during their interview would help them to remember to ask relevant questions and act as a reminder to bring up important topics of concern during a consultation. One woman living with multiple sclerosis said:
…from a patient’s point of view you can’t remember to say everything you want to say… They’re [questionnaires] little like triggers so that you …remember, or say things that aren’t necessarily in the forefront of your mind because something more important is happening. W11, Multiple sclerosis
Women living with LTCs explained that they often have complex needs as they were dealing with changes in their body due to pregnancy and the impact of childbirth. Women not only welcomed the opportunity to be involved in their own care, through the use of questionnaires; but also discussed the desire to talk about their personal health in an environment where they felt often that the emphasis was predominantly on the health of their baby. Women felt that completing the exemplar measures gave them the opportunity to open conversations on how they were feeling about their own health and wellbeing. This extended to the postpartum period. Women living with conditions requiring frequent contact with services during pregnancy, such as, diabetes and ulcerative colitis, found it difficult to access specialist knowledge about their LTC after the birth. Postnatal care predominantly consisted of interactions with community midwives or health visitors. In this context one women explained:
…the thing that I found difficult, even waiting a couple of weeks [after birth] … to see a consultant or somebody at the diabetes care team. If these [LTCQ] questions were asked earlier on then little issues that I might have been having, or my blood sugars, could have been resolved quicker….obviously, the midwives do ask questions …[they were] about the baby … the community midwives don’t have the understanding about the diabetes. W2, Diabetes (Type 1) and hypothyroidism
Healthcare professionals looked positively upon health and wellbeing measures as useful tools with which to facilitate dialogue, open up and identify areas of focus during consultations. Five healthcare professionals commented that using these measures could identify important support needs that could otherwise remain unknown. One obstetrician/obstetric physician articulated how the WiP could enable healthcare professionals to develop appropriate lines of enquiry:
[The WiP] …could give you openings into areas that you need to address …’which area is it that she's particularly worried about?’…make them explore areas that you wouldn’t explore if you were just asking an open question.. SH3, Obstetrician/Obstetric Physician
In addition to improving communication between healthcare professionals and women using maternity services, some healthcare professionals recognised the value of health and wellbeing measures within multidisciplinary settings. Using standardised measures was seen as an opportunity to share information between cross-functional colleagues to provide collective insight into a woman’s support needs. One health visitor said:
...if we’re then highlighting concerns to other professionals it is really useful to have a standardised tool that we can all relate to. SH11, Health visitor
Throughout the interviews, there was a consensus that any added benefit of using health and wellbeing measures in a clinical care context needed to have a clear purpose and that they should not become an administrative box ticking exercise.
Assessing outcomes
Health professionals discussed the use of health and wellbeing measures for assessing outcomes. Using measures to evaluate outcomes was viewed as particularly important in the context of assessing interventions where traditional endpoints were either difficult or inappropriate to measure. Three obstetrician/obstetric physicians gave the example of their potential use for capturing the outcomes of pre-pregnancy counselling services for women living with pre-existing LTCs. One commented:
…pregnancy counselling is very expensive….You can count deaths, you can count morbidity but linking that to pre-pregnancy counselling and ... avoiding anxiety in pregnancy because you’ve counselled the woman before, is impossible with our current tools. And so, if you were to come up with a tool that allowed me, or us, to measure; get a handle on how information is power and preparation helps the woman deal with … an adverse pregnancy outcome, because she's been counselled …measuring that is what I would like to be able to do through some form of questionnaire. SH1, Obstetrician/Obstetric Physician
Health visitors also discussed the difficulties of capturing outcomes of their services. One health visitor felt that health and wellbeing measures would be useful to monitor outcomes and measure the impact of their role, whilst the second highlighted the difficulties of capturing the complexity of their role:
…it’s always difficult, I think particularly with mental health, to identify what it is that our role has done, what impact has our role made on clients? So actually, it is useful to have … that comparison. SH11, Health visitor
…if you're trying to highlight the skill and the expertise and the complexity that health visitors are working with all the time, then actually I could see that … these might be something that might be useful. Um I think more around demonstrating that complexity that we work with on a daily basis that’s often not recognised. SH9,Health visitor
The women interviewed demonstrated more interest in completing measures as part of their individual care rather than to assess outcomes of services or research interventions. All indicated however that they would be happy to complete health and wellbeing measures if they were to inform research or monitor outcomes of a service.
Yeah, I just think that as long as you warn people that it’s not going to be used for… their own care…then I would be totally fine with…having these [questions] asked and answering them. W8, Asthma, Heart problems, Pernicious anaemia
The use and interpretation of data
Healthcare professionals indicated that they would require information on how to interpret scores for a specific measure for it to be informative. Two obstetrician/obstetric physicians and one GP advised that they would require baseline data and an indication of threshold scores for making referrals. One obstetrician said:
I think, before you could put them [measures] into day-to-day practice, you need the baseline data of what to expect and resources to know when to actually say, 'Well this is a woman who's really struggling from a mental health perspective with a pregnancy; she needs some support… So, is it normal that someone gets much more worried about the birth of a baby as she approaches that time; or is that something that people worry about all the way through the pregnancy?' SH3, Obstetrician/Obstetric Physician
Interviewees discussed the importance of having clear referral pathways if measures were used in health services. Some healthcare professionals expressed concern regarding the lack of referral options, for example, in cases where the need for mental health support became apparent. Others worried that it was not feasible to address certain support needs within a relatively short timeframe. One obstetrician/obstetric physician said:
…one has to be a bit realistic of what…obstetric services can sort out in effectively six or nine months….... you could signpost... if you delve into things for people you need to be able to offer a support or information or use it in their management plan…. it’s something the GP looking after someone with long term conditions should be assessing…. Optimise their health before [pregnancy] … I feel very strongly about GPs moving out of obstetric care, but they still have a huge responsibility in…getting people optimum for pregnancy SH5, Obstetrician/Obstetric Physician
Two women living with LTCs felt that health services should use health and wellbeing data to inform new practices. Women could then be reassured that resulting interventions were based on evidence and feedback from women who had used services in the past. One woman living with Type 1 diabetes and hypothyroidism said:
…[A HCP can]… say, 'We've populated this [questionnaire data] across a thousand women in the North East region and this is what the outcomes are …what we're going to try this time is as a result of this feedback. W2, Diabetes (Type 1) and hypothyroidism
In cases where measures are to inform an individual woman’s care, there was an overriding consensus among all participants that questions should be interpreted on an individual item basis so that important responses would not be missed. This is reflected in the thoughts of a diabetes specialist midwife and by a woman living with hypothyroidism:
For me, if someone said they felt lonely, that would be a red flag because in my mind that could lead to so many other issues when you’ve got someone that’s about to become a new mother, and yet at the same time they could feel completely safe in their home… everything else might be really quite alright, but if they felt really isolated and lonely who knows where that might lead to? So, yeah, I would want to have the individual responses and not just an overall score. SH10, Diabetes specialist midwife
I think the data collection points are great for service improvement and whatnot, but it's the conversation that’s going to make me as a [slight pause] as a person feel better. You know, you can score it all you like, but that doesn’t mean anything [to me]. W10, Hypothyroidism
A further suggested use of data was to monitor individual change over time. One consultant perinatal psychiatrist discussed the value of following scores on a specific measure over time. From a pregnant woman’s perspective, one woman discussed potential feelings of encouragement when seeing improvement in scores, whilst also highlighting areas for further management:
…I think it's quite a good way of showing an outcome….it's quite a nice thing to be able to show the patients that this is what you said; this is how you think things are progressing…Certainly finding a scale which resonates with our patient is really useful. SH6, Consultant perinatal psychiatrist
I think to be able to access them if I'm sort of sitting and self-analysing, to be able to access them and say, '… Look how different I'm responding to that question!,' and particularly if it's one that was quite upsetting perhaps, to have a marker of improvement would be very encouraging. But likewise, to be able to see if something's declining so that if no-one else is flagging it up you can sort of... you can perhaps flag it yourself if it's something you're keeping an eye on. W1, Type 1 diabetes
Challenges with engagement and implementation
Amongst the healthcare professionals within the sample, health visitors tended to discuss health and wellbeing questionnaires with most familiarity. The two health visitors interviewed described using standardised questionnaires as communication instruments with women in their care and were both receptive towards their use. It was, however, notable that the use of health and wellbeing measures within maternity care services was not common practice and some concerns were expressed when considering their adoption.
The obstetrician/obstetric physicians and GP within the sample considered their clinical training as key to identifying problems. It was within this context that they questioned the ‘added value’ of using health and wellbeing measures during their consultation as they already had protocols in place for gathering information to make assessments:
... I'm struggling slightly to see how, if I take a good health history, and ask the right questions with the patient, why would I need this?...But that said, you know, doctors are fallible; midwives are fallible; we don’t always ask all the questions; we miss stuff. SH1, Obstetrician/Obstetric Physician
Midwives were receptive towards using health and wellbeing measures within maternity care. Although generally positive towards their use however, one diabetes specialist remarked that some questions within the exemplar measures felt unnatural or repetitive as she had very frequent consultations with her patients and was therefore well acquainted with the women’s support needs. The infant feeding co-ordinator thought the measures would be useful for during a woman’s care; however, felt they were somewhat limited for use within her particular role as a breastfeeding consultant. In this setting, she felt an unstructured consultation worked best.
Two healthcare professionals and one woman cautioned that it was important to be mindful of the context in which specific measures are administered to ensure accuracy of responses. For example, women may find it uncomfortable to respond to questionnaire items regarding sensitive topics or satisfaction with care received. One woman living with a LTC commented:
I'm just a little bit cautious about questionnaires that you complete that are just fed back instantly, um and then alters your care. W6, Ulcerative colitis
Whilst the perinatal psychiatrist felt the exemplar measures were best asked in a face-to-face context, some concerns were raised over the accuracy of responses for some sensitive questions:
…unless you sort of changed the wording a little bit of that, that well-being in pregnancy one, I think you need to... they need to have permission to say I don’t like my baby which is a really, really hard thing to say. SH6, Consultant perinatal psychiatrist
Whilst it was acknowledged completing measures within maternity services could potentially require some additional resources, most interviewees did not raise this as a critical issue. Women living with LTCs felt that they would be a useful addition to their care and potentially allow resources to be focused on where they are most needed. Two women living with LTCs advised:
… I personally feel like they [the LTCQ and WiP] should be used [with] anybody who gets pregnant, and is … in and out of hospital with a long-term condition. I feel like any time that they see their obstetrician, or see a midwife, the midwife or whoever should at least talk to them or offer them these questionnaires to try and get a sense of how the pregnant lady with the long-term health condition is feeling … Because healthcare professionals don’t really have a great deal of time. So if they had a questionnaire like that to read off then they could maybe go into it a little bit more and say, ‘Okay, what’s this problem about?’ W4, Spinal condition: Diastematomyelia
…you could upload them to your maternity notes and you complete them and then a midwife gives you a call or something to go through them. I don’t think you necessarily need to sit with someone to do it. W12, Endometriosis and underactive thyroid
Women and healthcare professional alignment
Participants expressed varied views on the relevance of some individual items within the exemplar measures. On some domains, it was evident that there was some misalignment between important elements to include for women in this cohort. Differences arose between healthcare professionals and the patient perspective, but also between healthcare professional’s roles. For example, reflecting on an item in the LTCQ about loneliness, two obstetrician/obstetric physicians agreed that it was not critical for inclusion as it was more relevant to older frail people than the women they see or it presented too much overlap with other items that focused on emotional wellbeing. In contrast, a diabetes specialist midwife thought it one of the most relevant questions for her patients within the measure as many women are unaware that others are going through similar experiences. One woman described the importance of including items on the emotional aspects of health and, in particular, the item regarding loneliness:
I do think that that’s [loneliness] a good question, and I don’t think that it’s something that you get asked a lot. In all my pregnancies that’s one thing that I noticed, is that … The doctors are very concerned that I have bed rest, um and that my heart is not going to give me problems and that I’m not going to all of a sudden keel over and die, but no one is actually concerned about the fact that the whole thing is causing a huge amount of stress … suddenly you feel like you’re losing your mind. … even when you address it I get the feeling that those health professionals are a bit like, ‘Yes, we know that’s important, but right now that is not as important as the rest,’ and you are left a bit like, ‘Well, for me it is.’ …I think …the ‘felt lonely’, the ‘felt bothered’, even the ‘felt more dependent on others’ and ‘just feeling safe’, I think that those point to how little you are coping with it. W8, Asthma, Heart problems Pernicious anaemia
A further example of contrasting opinions regarding items was the WiP item ‘I am happy with how I look in pregnancy’. Whilst some healthcare professionals were sceptical of its relevance to caring for women with LTCs, a midwife welcomed its inclusion as a way of opening up relevant topics and a woman interviewed felt it resonated deeply with her feelings when using services:
Happy how I look in pregnancy? What are you going to do about that?... you can take that out. SH5, Obstetrician/Obstetric Physician
When you're looking after someone in pregnancy you often think about their emotional wellbeing and their physical wellbeing, but I don’t think I’ve ever asked the question, ‘How are you feeling about your body changing?’ There certainly are some women who that might be a trigger for in terms of feeling low in mood or unhappy about their pregnancy. It’s something I’ve probably never thought about before, but perhaps it is quite a useful question. SH8, Specialist midwife for hypertension and renal disease
I’ve been unhappy with how I look during pregnancy, but it’s not something that I’ve spoken about …I’ve been concerned just even going to see a consultant where you have to … have a scan as well, where you have to kind of undress slightly, and my hips and everything, everything’s all a strange shape and I feel like I’m having to apologise to those people about my body…As somebody with a long-term condition I am kind of happy that that question is in the questionnaire. W4, Spinal condition (Diastematomyelia)
Both women and healthcare professionals identified the EQ-5D-5L as the most general measure of the three discussed. Whilst the EQ-5D-5L was considered simple, quick and easy to complete, it was generally recognised as primarily useful for providing a high-level overview of health. One women interviewed reflected on the measures value:
…even though it's [EQ-5D-5L] so generic, you can actually get quite specific information and you can get a good idea of someone’s health status at that point…the nuances are not there, you don’t know why they're having a problem walking, why they can't take care of themselves, but it gives you a very good overview of their health. W6, Ulcerative colitis
Consistent with previous research [35], a health professional working with women with severe mental health conditions expressed concern regarding the use of the EQ-5D-5L and how patient responses should be interpreted:
…our patients really struggle with these sorts of questions... in terms of where do they place themselves and what's been distorted by how they're feeling. So, if they're severely depressed then they think ‘I can't do anything’ and give you very opposite answers … if you were severely anxious, you're sort of almost over confident…and sort of say, 'Well, I can do all these things but ... I'm just feeling really anxious all the way through, and in actual fact ... they almost over estimate what they can do….And so, things like self-care, then they're sort of like, 'Well, I can do it,' but the reality is that she might just take them a very long time to do it... So, if you’ve got OCD they're having to count every time they touch a tap and all these sort of things, then they're anxious….from my point of view actually, that’s a very severe problem. SH6, Consultant perinatal psychiatrist