Support available for and perceived priorities of people with polymyalgia rheumatica and giant cell arteritis: results of the PMRGCAuk members’ survey 2017

The cross-sectional survey of 13 questions was conducted by PMRGCAuk using SurveyMonkey.​com. A link to the survey was emailed to all members (n = 910) and other contacts on the charity mailing list with a valid email address in April 2017. The survey was also advertised in the NewsWire newsletter, which was sent by post to all members in the same month, and via the Charity’s website and social media outlets including Facebook, Twitter and the HealthUnlocked forum [10]. Potential participants were also able to contact the Charity to ask for paper copies of the questionnaire to be sent in the post and responses were entered manually into SurveyMonkey on their return to the Charity’s office. The survey was closed at the end of July 2017.

As this was a service evaluation conducted by the Charity, ethical approvals were not required.

The survey collected information in three broad areas, as outlined below.

For the purpose of analysis, the Likert scales were categorised to ‘Agree’ (strongly agree, agree) versus ‘Disagree’ (disagree, strongly disagree). “Don’t know/not applicable” was treated as missing, because these respondents did not express an opinion. Closed questions were analysed using frequencies and percentages. For items relating to current status of the respondents PMR and or GCA, how they found out about PMRGCAuk and why they do not attend a support group in person, where possible the responses in the text box were transposed into the pre-defined response options. Where this was not possible, the additional responses are noted in the footnotes to the tables.

Data from the text boxes relating to how each avenue of support could be improved were analysed independently by two researchers (SM, CAH) to identify recurring themes.

This survey has provided contemporary insights into the areas in which members of a PMR and GCA support charity think support and further research are important. These areas were broadly around management and prognosis. It also identified that members of PMRGCAuk are largely very satisfied with the support they receive from the Charity.

At the time of the survey, membership of PMRGCAuk was approximately 910, but the survey was also sent to other contacts of the Charity who were not members and there is the possibility that the survey may have reached other people as well. Hence, there is no denominator population against which to compare survey responders. However, we do not expect the reach to be large, as this is a relatively small patient community. Furthermore, the Charity did not request demographic information in the survey, and so, the respondents cannot be compared to a ‘classical’ PMR or GCA population. However, whether or not the sample is in any way ‘representative’ is largely irrelevant for the purposes of this paper and indeed includes one person who was a carer, rather than patient or former patient. It would seem unlikely that the survey has been completed by anyone who does not have an interest in either or both of the conditions, and the focus was to recognise what is important to a range of people with an interest in the conditions and to understand whether the charity is fulfilling its objectives. In this setting, the engagement of interested parties is seen by advisory groups, such as INVOLVE, as more important than representativeness [11]. Results from this survey give an insight into the opinions of those who seek help in managing these conditions over and above what has been offered by their usual health services. The completion of the survey by at least one person who reported themselves to be a carer is important for the Charity, who suspect that this is a growing group of people that needs their support. It should also therefore be a relevant group of people for clinicians, as they work with friends and relatives in caring for patients.

As populations age and the number of health conditions to be managed grows, collaboration between formal health services and the third sector (especially those promoting self-management strategies) will be key to providing comprehensive care to patients with a wide range of conditions. For example, The King’s Fund’s number 1 priority for commissioners is to provide active support for self-management [12] and the recent NHS “Realising the Value” programme [13] to support active patient self-management has been in partnership with a number of voluntary organisations. This type of partnership is likely to continue. As such, evaluations of the services provided by charities, such as PMRGCAuk, are relevant to clinicians so that they can ensure they signpost their patients to relevant sources of support.

The administration of the survey via SurveyMonkey may have impeded its completion by those without internet access, or the “knowhow” to complete the survey. According to recent data from the UK Office for National Statistics, which reports that 90% of those aged 55 to 64 years, 78% of those aged 65 to 74 and 41% of those aged 75 or over have used the Internet in the last 3 months [14], this is only likely to be a problem for those people at the older end of the PMR/GCA spectrum [15]. However, due to financial restrictions, an online survey was the only viable method of large-scale administration. To mitigate this problem as far as possible, the survey was also advertised via in the Newswire magazine. Three people requested and completed paper copies of the survey and some respondents stated in their responses to the open questions that they had made the effort to get someone else to help them complete the survey online.

PMRGCAuk is a UK-based charity and its provision is therefore aimed at patients living in the UK, who will be most likely be treated, at least in part, by the National Health Service (NHS), unless they have chosen to seek exclusively private treatment. This is relatively rare in the UK [16], as the general practitioner still has a gatekeeper role and glucocorticoid prescriptions would still be available on the NHS. However, there was evidence in the survey responses that at least one person completed their survey from the USA. It could be that more people than this were based outside the UK. In addition, many of the results regarding what is important to patients will be relevant to clinicians working outside the UK and in other healthcare settings. For researchers, the lack of an evidence base for elements of care that patients highlighted as important is an international issue, although potentially the importance of those aspects of care will differ.

There are few examples of charities and other patient organisations attempting to share their findings with the research community in as direct a way as a publication such as this. It is encouraging to see that the areas of highest concern to patients align with those highlighted in recent publications from experts in the field as requiring further research (e.g. [17, 18]), as this suggests that this is not a disconnect between theoretical knowledge and clinical practice. However, this is also a major concern, as it highlights gaps in the research field that are perceived, not only by experts, but by patients. Even with funding available to conduct research into these areas (e.g. prognosis, ideal glucocorticoid regimens), which in itself may be difficult to find in the current climate, recruitment to studies and follow-up to fill these knowledge gaps may take many years.

The majority of respondents thought information surrounding glucocorticoid treatment was important to people diagnosed with PMR and GCA. This is not to say that this information is not currently provided, but specific research evidence is lacking. Respondents reported that information on taking, reducing and the side effects of glucocorticoids was important. The current findings concur with a recent qualitative study with general practitioners [19] and highlight glucocorticoid management as a major area in which the evidence base is lacking and should be improved. For example, the EULAR/ACR guidelines for the treatment of PMR recommend a starting dose of 12.5 to 25 mg of prednisolone daily, and individualised tapering of the dose [7]. This is largely on the basis of expert consensus, rather than empirical evidence, and there is very little to guide the clinician in tapering the dose of an individual patient.

Other factors important to respondents were the outlook for recovery and knowing whether what they were experiencing was ‘normal’. It was also clear that many people do not know about these conditions until they are diagnosed, which may make the process of receiving a diagnosis more difficult and confusing for the patient [20]. While some people reported that the local support groups and the HealthUnlocked forum provided them with reassurance and guidance, it is not scientific, generalizable data that are provided via these media, and reliance on anecdotes could prove problematic. Indeed, around a quarter of respondents reported that they found the discussions on the HealthUnlocked forum confusing. What is required is an evidence base of outcomes in PMR to guide health professionals when discussing prognosis with patients and from which clinicians can provide the information that individual patients want. In order to fully provide for this need, a qualitative study of patients’ needs in relation to information provision is likely to be required.

The other major area of importance to respondents was the management of fatigue. This is something that is well-discussed in other rheumatological conditions (e.g. rheumatoid arthritis), but less so in PMR or GCA. Current EULAR/ACR guidelines conditionally recommend “an individualised exercise programme for PMR patients aimed at the maintenance of muscle mass and function, and reducing risk of falls…” [7]. Such provision of physiotherapy, education relating to pacing or similar graded exercise therapy for those with PMR or GCA, may help patients to pro-actively manage fatigue and debilitation. Further related research is overdue to guide health professionals to select suitable treatments.

The research community should be aware that for many of the aspects of care for those with PMR and or GCA that were highlighted by survey respondents, there is little evidence base from which to provide information or change in practice. This should be addressed as a matter of urgency to improve the quality of life of those diagnosed with these conditions. Specifically, evidence is needed on optimal glucocorticoid regimens, prognosis, and the additional information and guidance that patients require from their doctors and other health professionals. Whilst such evidence is generated, clear and relevant information to aid self-management should be available to those who desire it.