Patients' hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study

McDermott, Clare; Lynch, Jeannette; Leydon, Geraldine

doi:10.1093/fampra/cmr016

Cited by 16 publications

(12 citation statements)

References 17 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…The effectiveness of this approach, in conjunction with other factors such as services’ attention to detail around issues such as accessibility and flexibility, would contribute to favourable views of services among patients. ‘Alternative’ approaches to treatment, such as accepting the legitimacy of patients’ accounts of their illness and providing realistic expectations of treatment outcomes [42], have already been adopted, and our study confirms that referral to a specialist service is highly valued [43]. …”

Section: Discussionsupporting

confidence: 70%

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

Broughton

Harris

Beasant

et al. 2017

BMC Health Serv Res

View full text Add to dashboard Cite

BackgroundFew studies have explored patients’ experiences of treatment for CFS/ME. This study aims to fill this gap by capturing the perspective of patients who have been treated by NHS specialist CFS/ME services in England.MethodsSemi-structured interviews were conducted during the period June–September 2014 with 16 adults who were completing treatment at one of three outpatient NHS specialist CFS/ME services. Interviews were analysed thematically using constant comparison techniques, with particular attention paid to contrasting views.ResultsThree themes were identified: ‘Journey to specialist services’; ‘Things that help or hinder treatment’; and ‘Support systems’. Within these themes nine sub-themes were identified. A wide range of factors was evident in forming participants’ experiences, including personal characteristics such as perseverance and optimism, and service factors such as flexibility and positive, supportive relationships with clinicians. Participants described how specialist services played a unique role, which was related to the contested nature of the condition. Many participants had experienced a lack of validation and medical and social support before attending a specialist service. Patients’ experiences of life before referral, and the concerns that they expressed about being discharged, highlighted the hardship and obstacles which people living with CFS/ME continue to experience in our society.ConclusionsThe experiences of CFS/ME patients in our study showed that NHS specialist CFS/ME services played a vital role in patients’ journeys towards an improved quality of life. This improvement came about through a process which included validation of patients’ experiences, acceptance of change, practical advice and support, and therapeutic outcomes.Electronic supplementary materialThe online version of this article (doi:10.1186/s12913-017-2337-6) contains supplementary material, which is available to authorized users.

show abstract

Section: Discussionsupporting

confidence: 70%

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

Broughton

Harris

Beasant

et al. 2017

BMC Health Serv Res

View full text Add to dashboard Cite

show abstract

“… 37 We reported in a previous paper that patients do value referrals, 24 which is in accordance with patients' reports that specialist services provide acknowledgement of their ailments, treatment, better handling of daily life issues and improved dialogue between professionals. 38 However, patients with CFS/ME often have to struggle for a referral, 39 40 which might affect the relationship with their GP. Patients in Europe have evaluated GP care more positively in countries without gatekeeping, 29 and the Norwegian gatekeeping system could explain some of the low primary healthcare scores.…”

Section: Discussionmentioning

confidence: 99%

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study

Hansen

Lian

2016

BMJ Open

View full text Add to dashboard Cite

ObjectiveTo test the association between self-rated health and self-rated degree of chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME), and CFS/ME patients' assessment of quality of primary care, specialist care and coordination of care.DesignCross-sectional study.SettingSelf-reported questionnaire data from women members of The Norwegian ME Association obtained in 2013.Participants431 women with CFS/ME aged 16–73 years.Main outcome measureThe participants' assessment of quality in primary care, specialist care and in coordination of care (good/very good or poor/very poor). Main explanatory variables: self-rated health and self-rated degree of CFS/ME.ResultsQuality of care was rated poor by 60.6% in primary care, by 47.7% in specialist care, and by 71.2% regarding coordination of care. Poorer self-rated health increased the probability of rating quality in primary care poor, particularly among women 40 years and over (OR 2.38, 95% CI 1.63 to 3.49), women with university education (OR 2.57, CI 1.68 to 3.94), and owing to less frequent general practitioner (GP) visits (OR 2.46, CI 1.60 to 3.78). Poorer self-rated health increased the probability of rating quality poor in specialist care (OR 1.38, CI 1.05 to 1.82), but not in coordination of care. A more severe CFS/ME was associated with a higher probability of rating quality in primary care poor (OR 0.61, CI 0.38 to 0.93). Frequent visitors and those with a long GP relationship were less likely to report primary care quality as poor.ConclusionsA large proportion of women with CFS/ME rated quality of care poor/very poor in primary care, specialist care and in coordination of care. The dissatisfaction was higher for primary care than for specialist care. Overall, poorer self-rated health and a more severe CFS/ME were associated with lower quality scores in primary and specialist care, but not in coordination of care. Healthcare services, as assessed by women with CFS/ME, do have a large potential for improvement.

show abstract

“…Glynn et al 3 found that two of three patients >50 years of age had multimorbidity, with office visits, hospital admissions and outpatient visits and total health care costs increasing greatly for those with more than four compared to no chronic conditions. McDermott et al 4 found that patients with chronic fatigue syndrome highly valued referral to a specialist service but that they needed more information and reassurance about the condition during the waiting period to be seen there. Vashitz et al 5 found that physicians adhered poorly to guidelines for dyslipidaemia screening and treatment, illustrating the need for more follow-up.…”

Section: A Wide Variety Of Interventions Have Been Testedmentioning

confidence: 99%

Care coordination: what is it, what are its effects and can it be sustained?

Solberg¹

2011

Family Practice

View full text Add to dashboard Cite

Patients' hopes and expectations of a specialist chronic fatigue syndrome/ME service: a qualitative study

Cited by 16 publications

References 17 publications

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

Adult patients’ experiences of NHS specialist services for chronic fatigue syndrome (CFS/ME): a qualitative study in England

How do women with chronic fatigue syndrome/myalgic encephalomyelitis rate quality and coordination of healthcare services? A cross-sectional study

Care coordination: what is it, what are its effects and can it be sustained?

Contact Info

Product

Resources

About