Challenges involved in collecting and analysing the reported experiences of patients with lymphoedema

The Lymphoedema Wales Clinical Network, known as Lymphoedema Wales (LW), provides a local and national service to all people in Wales who are at risk of, or diagnosed with, lymphoedema. This includes ensuring patients are supported to manage their condition through local access to expert assessment, advice and treatment. As part of the ‘value-based healthcare’ (VBH) initiative, LW supports high-quality care that is not wasteful and is based on what matters most to patients. The Lymphoedema-specific Patient Reported Outcomes Measure (LYMPROM^©) has been instrumental in developing a PROM-led service. However, this is by no means the sum of value-based projects being undertaken. There have been weak positive correlations observed between patient-reported outcomes and experiences (Black et al, 2014), with the strongest associations between communication and outcomes. Thus, a key focus for LW has been communication strategies. The newly developed LW Patient Advisory Panel provides valuable oversight on the programmes of work and service developments undertaken. Bolstering the patients' voice across all areas of care, a Lymphoedema-specific Patient Reported Experience Measure (LYMPREM^©) is routinely collected by all lymphoedema services in Wales. LYMPREM is used as an important indicator of quality (Kingsley and Patel, 2017), while supporting co-production of service developments and quality improvement initiatives (Withers et al, 2021). This article provides a summary of the opportunities and challenges identified by LW when using LYMPREM nationally. It also provides an example of PREM data being implemented in health care (Jamieson Gilmore et al, 2023).

Challenges

An initial challenge for LW was identifying a suitable PREM. Several reviews caution the interpretation of PREMs, discussing the influence of preconceived expectations, a lack of robust validation studies and particularly questioning their responsiveness and measurement errors (Male et al, 2017; Bull et al, 2019; Withers et al, 2021). Therefore, key stakeholders reviewed literature and existing measures to identify an appropriate PREM that captured relational and function domains:

• The appointment (convenience, location, access and treatment options)
• Treated with respect and dignity, within a space that affords privacy
• Information and communication (opportunity to ask questions and understanding of information given)
• Patient-centred care (shared decision making, engagement and self-efficacy)
• Overall satisfaction.

Developing LYMPREM

No existing PREM collected the required information or used a response scale that was considered sensitive enough to measure change over time (responsive). As a result, the bilingual (English and Welsh) 14-item LYMPREM was developed and piloted in two Welsh health boards using an online platform in 2020. Paper-based or telephone completion options were available on request. Using the online platform, LYMPREM was collected after each planned contact (see Figure 1).

In the autumn of 2021, 2474 completed LYMPREM responses were reviewed, identifying opportunities for improvement:

• Instructions were added to reduce the inclusion of clinical information (that warranted timely action) in the free-text boxes
• A new item on choice and options was added
• A question about experiences of compression garments and using LYMPROM was removed
• Guidance on general completion was added
• The response scale changed from a five-point happiness scale to a five-point agreement scale.

The two free-text boxes were retained, giving rise to the revised LYMPREM (Figure 2). Recognising the weaknesses of previously validated PREMs, LW members are already planning robust validation of LYMPREM.

A positive experience

To date, five of the seven health boards in Wales are collecting LYMPREM digitally, with a sixth at the planning stage. More than 6000 LYMPREM have been completed with a positive overall experience reported (see Figure 3). Typically, in-person appointments afforded a ‘better’ experience as indicated by a strong agreement when asked if they were happy with their overall experience (3623/6393 strongly agreed that they had a good overall experience and, of those, 2832 (78%) were in-person; 756 (21%) were by telephone; 22 (less than 1%) were by video; and 13 did not specify appointment mode). However, summarising agreement and strong agreement with this item showed a similar picture across appointment mode (range 89-96%). Aggregate data reports and anonymised quotes highlighted the positivity patients felt towards their lymphoedema service during the challenging period of the COVID-19 pandemic and these reports provided a boost to the lymphoedema therapists (who include nurses and physiotherapists) and team morale.

More recently, findings are being used to identify improvements such as the timely issue of compression garments and providing care closer to home; with location and access to clinics being a frequently raised issue across lymphoedema services in Wales. Paper-based and telephone completion of the LYMPREM questionnaire have had poor uptake and this may reflect the resource requirements and prompt consideration of ways of supporting patients to return paper-based PREMs from the comfort of their home. However, although some patients found the text and email contacts intrusive or repetitive, when surveyed most still wanted the opportunity to report on their experiences after each contact.

Implementing a national PREM has some important considerations. Having oversight of digital adaptation and use has been vital, with the national PROM and PREM steering groups maintaining procedures. Operationally, each health board has had to develop and implement LYMPREM using their online platform and have been responsible for sharing their data with LW as a monthly Microsoft Excel extract. Although this is moving towards automated procedures using, for example, Fast Healthcare Interoperability Resources, this presently requires extraction and cleaning of data, before reporting at the aggregate level can take place (Figure 1).

An unexpected outcome

Making use of the existing PROM platform has been an overall benefit. It has maintained continuity of providers for patients; however, the longer term aspiration is to embed the platform within a single entry point to approved NHS applications or platforms. Using the PROM platform affords the opportunity to examine the correlation with outcome measures. It also allows for actioning of the free-text comments. This was an unexpected outcome. Despite guidance explaining that the free text cannot be used to resolve individual queries, with local contact details provided, a minority of patients are using LYMPREM to record clinical issues such as problems with compression garments and mental health concerns.

LYMPREM appears to be providing some patients with a communication tool that perhaps is being used in place of the existing lines of communication: chiefly telephone access. This has been an important finding, highlighting the required resources to ensure appropriate and timely redress of concerning free-text comments and supporting ongoing thematic analysis to share points of commonality that offer the chance to learn and develop. This has meant the national team reviews the free text on a monthly basis in line with extraction from the platform and signposts free-text comments that warrant further review or even patient contact using standard guidance. As data are extracted on a monthly basis this is always done retrospectively and further safeguarding measures are being undertaken to ensure patients are aware of this.

Positive experiences

Common themes in the free text predominantly cover a positive experience and having a good relationship with their therapists, who are seen as compassionate, knowledgeable and professional. A small proportion of free-text comments highlight the challenges for patients in getting to clinic, having an appointment or receiving their compression garments. A smaller cohort still signpost clinical information that warrants review, which might be a follow-up appointment or telephone call to review their compression garment or signposting to supportive services where mental health concerns are noted. Only one health board is currently using an anonymous patient experience platform. Although the anonymous platform used could flag words of concern within the free text, this in itself might not be sufficient to identify comments that need action and may miss some nuances of language. Work is under way to ensure information is acted upon appropriately (such as giving the option for patients to leave contact details) and potentially removing the free-text boxes.

Aligning with VBH, strategic priorities and having adequate information technology support and infrastructure has supported the digital implementation of LYMPREM nationally (Bull et al, 2022). This has been is a multi-stakeholder endeavour, involving patients and therapists along with local and national value and digital teams and local patient experience services. Supporting the analysis and feedback of findings has been a further consideration that has been met by the national team, removing the burden on local services. This ensures the patient voice in their care (at the individual and aggregate level) is seen as a priority for healthcare providers.

Learning from patients

At a time of finite resources with an increasing population with chronic and sometimes complex needs, meeting the physical and emotional needs of patients can support value-based initiatives. In LW, this includes ongoing work to ensure patient follow-up is based on needs, using patient-initiated follow-up. Making sure patients are not overly burdened with condition-specific measurements is a challenge. However, LYMPREM findings and anecdotal feedback highlight that patients are mostly concerned with making their voice matter. Using the valuable information they have provided, LW staff have shown how to incorporate PREMs in usual care and share opportunities to learn. LW has most recently developed a poster (the content of which is described in Table 1), highlighting LW's response to patient feedback. This unites patient experience data with tangible action and responses from local services.