What makes a chronic pelvic pain patient satisfied?

Wygant, Jenna N; McGuire, Lois; Bush, Nicole M; Burnett, Tatnai L.; Green, Isabel C.; Breitkopf, Daniel M.

doi:10.1080/0167482x.2018.1476486

Cited by 11 publications

(10 citation statements)

References 10 publications

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“…Women who felt validated were generally more satisfied with treatment, even if their symptoms had not entirely resolved. This is a key message for treating physicians, and consistent with a prior qualitative survey of 90 patients with chronic pelvic pain: patient satisfaction was closely related to having healthcare providers who were compassionate and listened; pain relief was seldom mentioned as a source of patient satisfaction 36 . Many women in our study were at least somewhat satisfied with treatment, with several commenting their pain was successfully managed and that a positive relationship with a ‘good’ provider made the difference.…”

Section: Discussionsupporting

confidence: 85%

Treatment use and satisfaction in Australian women with endometriosis: a mixed‐methods study

Evans

Villegas

Dowding

et al. 2022

Internal Medicine Journal

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Aims: To document the frequency of conventional and complementary treatments used by Australian women with endometriosis and the perceived efficacy of these treatments, and to qualitatively explore women's treatment satisfaction.Background: We do not adequately understand whether Australian women with endometriosis are satisfied with their medical care.Methods: Using a mixed-methods design, 532 women with self-reported endometriosis were recruited from the community. Participants were asked about their medication, complementary and self-care treatment use, as well as perceived efficacy on a 0 (not effective) to 10 (extremely effective) numeric rating scale, and open-ended qualitative survey items about treatment satisfaction.Results: Ninety-seven percent of women used medication for pain relief (mean perceived efficacy = 5.05) and 89% used complementary/self-care strategies (mean perceived efficacy = 3.70), with medication rated as significantly more effective (P < 0.001). Content analysis of the qualitative data identified that 36% of women were dissatisfied with treatment, 34% were somewhat satisfied and 24% were satisfied. We identified qualitative themes relating to: (i) barriers to treatment, which included lack of access, stigma and disappointment with medical professionals who were perceived as uncaring, unhelpful and, in some cases, psychologically damaging; (ii) the need for holistic, interdisciplinary care; and (iii) patient knowledge, advocacy and resilience in endometriosis management.Conclusions: Our findings reveal important limitations in the current Australian healthcare model, including the need for patient-centred interdisciplinary care that treats the biopsychosocial needs of people with endometriosis, and widespread pain education, spanning medical training to community awareness.

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Section: Discussionsupporting

confidence: 85%

Treatment use and satisfaction in Australian women with endometriosis: a mixed‐methods study

Evans

Villegas

Dowding

et al. 2022

Internal Medicine Journal

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“…Rowe et al found three domains of endometriosis care that could influence patient satisfaction with endometriosis care: (i) information that meets patients’ needs; (ii) being heard with empathy and respect; and (iii) technical competence. Similar domains were also found by two previous questionnaire studies investigating patient satisfaction ( Lukas et al , 2018 ; Wygant et al , 2019 ).…”

Section: Introductionsupporting

confidence: 87%

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Schreurs

Wijsard

Dancet

et al. 2020

Human Reproduction Open

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STUDY QUESTION What is the performance of the patient-centredness of endometriosis care in a secondary and a tertiary care setting and how can it be improved? SUMMARY ANSWER Overall, patient-centredness was comparable in the two endometriosis care centres, but differed regarding ‘physical comfort’ and ‘continuity and transition’; both centres can learn how to improve several of their targets from the other’s strengths. WHAT IS KNOWN ALREADY The ENDOCARE questionnaire (ECQ) is a validated questionnaire for assessing the important quality dimension ‘patient-centredness’. Patient-centredness is associated with quality of life, although this should be explored further by larger-scale studies. STUDY DESIGN, SIZE, DURATION A cross-sectional survey, relying on the ECQ, was performed (during 2015 and 2016) among 407 women with surgically diagnosed endometriosis. PARTICIPANTS/MATERIALS, SETTING, METHODS This study was conducted in a secondary and a tertiary care centre in the Netherlands. A total of 209 Dutch-speaking women who had endometriosis surgery (2013–2014), completed the ECQ after a postal invitation and, if needed, postal reminders. The assessed outcomes were: overall patient-centredness, the patient-centredness for each of its 10 dimensions, and the patient-centred strengths and targets for improvement. Case-mix adjusted patient-centredness scores (PCS) were compared and strengths and targets for improvement were identified with a matrix modelling importance against experience. The need to improve the targets was quantified with quality impact indices. MAIN RESULTS AND THE ROLE OF CHANCE No difference was demonstrated between the overall PCS of the secondary and tertiary centres (respectively: 4.8 and 4.5; P = 0.15). No difference was found in PCS per dimension between the two clinics except for the secondary care centre performing better regarding ‘physical comfort’ (respectively: 4.5 and 3.0; P = 0.01) and ‘continuity and transition’ (respectively: 6.0 and 4.2; P = 0.01). The two centres had nine targets for improvement in common. The secondary and tertiary centres, respectively, had five and seven additional centre-specific targets for improvement. Cross-centre learning is encouraged as 9 out the 12 additional centre-specific targets were strengths in the other centre. The main improvement targets were being able to contact the centre in case of emergency (both centres), the involvement of a significant other (secondary centre), diagnostic delay (secondary centre), personal follow-up (tertiary centre) and disclosing the level of competence of healthcare providers (tertiary centre). LIMITATIONS, REASON FOR CAUTION Responders did not differ from non-responders in their stage of endometriosis, educational level, rating of endometriosis care and degree to which their complaints are suppressed. Endometriosis is a chronic condition and patient-centredness might be experienced differently at other points of the endometriosis care trajectory. WIDER IMPLICATION OF THE FINDINGS The ECQ is a useful tool to assess patient-centredness in both secondary and tertiary care centres. Further research should focus on how to improve endometriosis care. STUDY FUNDING/COMPETING INTEREST(S) No external funding was used. V.M. and C.B.L. report grants from Guerbet, grants from Merck and grants from Ferring outside the submitted work. All authors declare that they have no competing interests concerning this publication.

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“…IC patients usually present with variable combinations of signs and symptoms resulting from underlying risk factors described previously, which are identified from the signalment and a careful history. Skepticism from medical providers can diminish patient satisfaction and outlook ( 197 , 198 ), and a qualitative study reported that women with IC commonly experience disbelief and pain dismissal from healthcare providers, which can prevent effective communication with them and lead to suboptimal care ( 199 ).…”

Section: Discussionmentioning

confidence: 99%

Interstitial cystitis—an imbalance of risk and protective factors?

Westropp,

Stella,

Buffington

2024

Front. Pain Res.

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Interstitial cystitis (IC) presents as a chronic pain condition with variable combinations of symptoms depending on the species and individual patient. It is diagnosed by the presence of lower urinary tract signs and symptoms in combination with a variety of comorbid health problems, a history of life adversities, and the absence of other conditions that could cause the lower urinary tract signs. IC occurs naturally in humans and cats as a dimensional condition, with patients presenting with mild, moderate, and severe symptoms. Most patients appear to recover without specific treatment. A number of rodent models of IC have been used to study its causes and treatments. Unfortunately, current therapies generally fail to ameliorate IC symptoms long-term. The recent classification of IC as a chronic primary pain disorder calls for a rethinking of current clinical and research approaches to it. Beginning when a patient encounters a clinician, precipitating, perpetuating, and palliating risk factors can be addressed until a cause or reliably effective therapy is identified, and identifying predisposing and preventive factors can inform epidemiological studies and health promotion interventions. Predisposing, precipitating, and perpetuating risk factors, including environmental, psychological, and biological, increase the activity of the central threat response system (CTRS), which plays a clinically important role in IC symptoms. Studies in cats and rodent models have revealed that environmental enrichment (EE), in the absence of bladder-directed therapies, leads to amelioration of IC symptoms, implying a central role for the CTRS in symptom precipitation and perpetuation. Conceptually moving the source of IC pain to the brain as a motivational state rather than one resulting from peripheral nociceptive input offers both clinicians and researchers novel opportunities to improve care for patients with IC and for researchers to use more ecologically valid rodent models. It may even be that IC results from an excess of risk to protective factors, making this imbalance a targetable cause rather than a consequence of IC.

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What makes a chronic pelvic pain patient satisfied?

Abstract: The data suggest that a focus on empathic communication may make a meaningful difference in meeting the needs of women with CPP as well as strengthening the provider/patient relationship.

Cited by 11 publications

References 10 publications

Treatment use and satisfaction in Australian women with endometriosis: a mixed‐methods study

Treatment use and satisfaction in Australian women with endometriosis: a mixed‐methods study

Towards more patient-centred endometriosis care: a cross-sectional survey using the ENDOCARE questionnaire

Interstitial cystitis—an imbalance of risk and protective factors?

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