Health literacy needs in weight management of women with Polycystic Ovary Syndrome

2.1 Study design

Focus groups and semi-structured telephone interviews (offered to women through telephone who were unable to attend the focus groups) were conducted. This investigation is part of a larger qualitative study that assessed the feasibility and acceptability of an RCT involving acupuncture and lifestyle for weight management in women with PCOS.³¹ This study received approval from the Western Sydney Human Research Ethics Committee (H11935/28 Nov 2016). Written informed consent was obtained from all participants.

Focus groups collect qualitative data within a group context, which are particularly useful in a group of participants with similar characteristics and have the advantage of establishing whether or not consensus has been reached. It also allows for mutual exploration and refining of ideas through group discussion.³² Women who had agreed to attend the focus groups but could not attend on the day due to unforeseen circumstances were offered one-on-one telephone interviews. Data collection continued until data saturation was achieved that is no new themes arose during interviews.

2.2 Participants

Recruitment occurred between December 2016 and March 2017. Women with PCOS living in Sydney, NSW, Australia, were recruited through social media (paid and unpaid posts on relevant Facebook pages). Inclusion criteria were: self-reported diagnosis of PCOS according to the 2003 Rotterdam Criteria [16]; (BMI) >25 kg/m²; no other endocrine disorders; not pregnant or no pregnancies in the preceding 6 weeks and ability to converse in English.

2.3 Data collection and analysis

The focus groups and semi-structured interview questions were developed by CE. An experienced research officer (BB) facilitated the focus groups while two researchers (CE and LI) took field notes. A Health Promotion undergraduate student (LI) conducted the interviews. Telephone interviews and focus group discussions were audio-recorded and transcribed verbatim by an independent transcribing service. BB is a female research assistant with a Health Psychology and Masters of Biostatistics background and little prior knowledge on PCOS but with a broad range of experience in health sciences. CE is a female GP and acupuncture researcher (PhD) with a research interest in PCOS. LI is a female undergraduate Health Promotion student with previous experience in conducting a semi-structured interview and has an interest in PCOS.

Basic demographic data including age, BMI, ethnicity and educational level were collected in a survey prior to the interviews/focus groups. The interviews and focus groups explored topics on past weight loss attempts, knowledge and attitudes towards various different weight interventions, perceived effectiveness, perceived advantages and disadvantages, barriers and facilitators to engage with these interventions. Phone screening was completed to determine eligibility and to explain study procedures, with LI having no prior contact. Participants were made aware of CE’s research interest in PCOS and her clinical background in acupuncture and primary care.

All women were given pseudonyms to protect their identities. Transcripts were circulated to participants for member checking; no clarifications or changes were requested. Thematic analysis of the transcripts was conducted using the method of constant comparison.³³ Within this method, three of the investigators (BB, CE and FM) independently coded a subset (20%) of the transcripts. Consensus on codes and subcodes were then reached through discussions between the investigators. The resulting coding scheme was subsequently applied to the rest of the data (BB). The emergent themes were combined into categories through mind mapping by another investigator (SL). Consensus on categories was reached through discussion between two investigators (SL and CE). The categories were then mapped against the health literacy domains (SL), followed by consensus through discussion (SL and CE). The health literacy domains were determined a priori as conceptualised in previous studies, namely functional, interactive and critical health literacy. ^{23, 34} We used Microsoft Excel 2016 Version 15.40 to manage the data. None of the investigators was aware of any potential biases or assumptions about PCOS although CE was particularly interested in the role of complementary therapies for weight loss in PCOS. SL is a research dietitian with a research focus on PCOS and is experienced in developing lifestyle programs for women of reproductive age.

3.1 Functional health literacy

Within the domain of knowledge, skills and motivation, women with PCOS are highly motivated for lifestyle and weight management due to the long-term consequences of PCOS. They also reported some areas of knowledge and skills in diet, but there was a lack of reporting on other essential skills in weight management such as goal-setting and self-monitoring. Many reported a lack of sustained results from weight loss, which were perceived to be related to PCOS, which reduced their motivation to sustain their effort in weight management. There were other motivational barriers including dislike of food, tiredness, mundaneness of dietary and physical activity intervention and having negative thoughts that prevent them from engaging in these efforts. There were also volitional barriers that affect the implementation such as being time poor, which may be exacerbated by long work hours, preventing the engagement with lifestyle modifications.

3.2 Interactive health literacy

Within the domain of ability to engage health care professionals, several participants were currently or had been supported by dietitians for lifestyle management. Barriers were cited for this domain, including delayed diagnosis, poor communication between the health care provider and patient on the issue of weight management and PCOS management, inappropriate lifestyle advice provided without consideration of life context of the participants and a sense of underperforming.

Within the domain of ability to access health service and support for health, some participants cited environmental barriers to exercise such as unsafe neighbourhoods preventing walks. Overall the participants were very resourceful in accessing and attempting a wide range of weight loss approaches, including conventional (eg various dietary patterns, exercise, medication, meal replacements, commercial weight loss programs) and nonconventional methods (Chinese medicine, legal recreational drugs). However, this resourcefulness could at times be tempered by the costs or the feelings of embarrassment associated with accessing these services.

Within social support to manage health, family and online support groups were both cited as facilitators as well as barriers. Not having access to other women with PCOS was cited as a need or barrier in this domain. Having someone to be accountable and having successful experiences from peers in weight management was a facilitator in this domain.

3.3 Critical health literacy

No facilitators and barriers could be identified for the domain of participation in making decisions for health.

4.1 Functional health literacy

Women with PCOS had a wide range of experiences in weight loss attempts, which are consistent with a past study reporting that women with PCOS were more likely to attempt most of the practices compared with women without PCOS.³⁵ However, most of these attempts appeared to be self-initiated with very little or no support by health professionals.^{36, 37} Only two participants had visited a dietitian, which is also consistent with the generally low referral rate of women with PCOS to dietitians. This can result in patients seeking alternative sources of advice and support for lifestyle modification.^{37, 38} The lack of support from health professionals with specific training in lifestyle modification is reflected in the themes of the current study through a lack of reference to key behaviour change techniques for weight management, such as goal-setting and self-monitoring.³⁹ This may contribute to the frustration from the lack of sustained weight loss in women with PCOS.

4.2 Interactive health literacy

We have shown significant need in the area of interactive health literacy, as reflected in the overall sense of women's frustration and not feeling supported or understood by their health care professionals. The issues around delay or uncertainty in the diagnosis of PCOS, lack of sufficient information and poor communication between health care professionals and women with PCOS were a consistent finding in the current and past studies.^40-42 This suggests a need for more training and resources for health care professionals in assessing and managing PCOS. Studies in the general population also reported that lack of training, resource and confidence are among the barriers cited by health care professionals to provide lifestyle counselling.⁴³ It also highlights the need for resources to empower women with PCOS to discuss their health issues with their health care professionals. The recently published International Evidence-Based Guidelines for the Assessment and Management of PCOS¹⁵ may address some of these issues by providing clear guidance and a translational resource to both health care professionals and women with PCOS. This includes information on the diagnosis and management of PCOS, with detailed lifestyle information. An AskPCOS smartphone application which includes a question prompt list that enables women with PCOS to discuss targeted health concerns with their health care providers has also been developed in guideline translation.^{44, 45} Wider adoption of tools such as the question prompt list may improve the interactive health literacy of women with PCOS, as previously demonstrated in the general population.^{44, 46}

Some women with PCOS expressed a lack of peer support specifically from other women with PCOS. This may exacerbate the sense of isolation given women with PCOS were more likely to report reduced social interactions.⁸ Positive and negative experiences from online support groups for PCOS have been reported by the participants of the current study. A past study has similarly reported that online peer support groups have the benefit of connecting with others of similar condition but may have the downside of anxiety resulting from reading about the negative experiences of others.⁴⁷ It has also been suggested that health literacy could be a group instead of an individual characteristic, known as distributed health literacy.⁴⁸ Under this paradigm, health literacy is a resource that is distributed through a social network so that the health outcomes of individuals are influenced and supported by the group overall. The health literacy of the group and the individual have been found to be independent predictors of health status.⁴⁹ Disseminating information and resources among peer support groups for PCOS could be an additional strategy to increase the distributed health literacy of women with PCOS as a group, in addition to providing opportunities to access social support for health from a relatable peer.

4.3 Critical health literacy

None of the participants attributed their past successes in lifestyle and weight management to a strong partnership with a health care professional, including being involved in shared decision-making and participating in the co-development of health management plans. As this level of health literacy is built upon functional and interactive health literacies, the weaknesses in the lower levels of health literacy, particularly those around the relationship with health care providers, may have prevented the development of a partnership with health care professionals. This represents a significant research and practice gap, not just in PCOS but also in other fields of health promotion.¹⁹ This has led to interventions being done ‘to’ people instead of ‘with’ or ‘by’ people which limits its ability to build individuals’ capacity towards independence. There are now a range of co-creation models including value co-creation, experience-based co-design, technology co-design and community-based participatory research that has been shown to improve the effectiveness of interventions including diet and physical activity modifications in other populations.⁵⁰ This gap is recognised in the PCOS guidelines. In addition to addressing the needs and gaps in functional and interactive health literacy, future effort should also include creating opportunities through systems change or tools development to enable consumers to be an active agent in their relationship with their health care provider.

A strength of this study is the in-depth exploration of health literacy issues using qualitative data on the experiences of community-recruited women with PCOS on lifestyle and weight management. The current study has several limitations. First, the sample size is small, however, thematic saturation was achieved in this sample and the themes were agreed by at least two reviewers, supporting internal validity. Second, the interviews were conducted in English without the presence of interpreters. This precluded the experiences of those who do not speak English.