BackgroundPatient‐reported outcome measures (PROMs) measure patients’ perspectives on health outcomes and are increasingly used in health care. To capture the patient's perspective, it is essential that patients are involved in PROM developmentObjectiveThis article reviews in what ways and to what extent patients are involved in PROM development and whether patient involvement has increased over time.Search strategyLiterature was searched in PubMed, EMBASE, MEDLINE and the Cochrane Methodology Register.Inclusion criteriaStudies were included if they described a new PROM development.Data extractionBasic information and information regarding patient involvement in development phases was recorded.Main resultsA total of 189 studies, describing the development of 193 PROMs, were included. Most PROMs were meant for chronic disease patients (n = 59) and measured quality of life (n = 28). In 25.9% of the PROM development studies, no patients were involved. Patients were mostly involved during item development (58.5%), closely followed by testing for comprehensibility (50.8%), while patient involvement in determining which outcome to measure was minimal (10.9%). Some patient involvement took place in the development of most PROMs, but in only 6.7% patients were involved in all aspects of the development. Patient involvement did not increase with time.ConclusionsAlthough patient involvement in PROM development is essential to develop valid patient‐centred PROMs, patients are not always involved. When patients are involved, their level of involvement varies considerably. These variations suggest that further attention to building and/or disseminating consensus on requirements for patient involvement in PROM development is necessary.

BackgroundPatient‐reported outcome measures (PROMs) are increasingly used to establish the value of health care. In order to reflect value, PROMs should measure outcomes that matter to patients. However, patients are not always involved in the development of PROMs. This study therefore aimed to investigate whether PROMs, which were developed without patient involvement, are relevant to patients and whether the level of importance allocated towards aspects of these PROMs varies between patient groups.MethodsAll patients from 20 Dutch hospitals undergoing hip or knee surgery in 2014 were invited to a PROMs survey. Participants were asked to rate the importance of each of the items in the HOOS‐Physical Function Short form or the KOOS‐Physical Function Short form, the EQ‐5D and the NRS pain.ResultsMost outcomes were considered important. However, 77.7% of hip surgery patients rated being able to run as unimportant. Being able to kneel (32.7%) or squat (39.6%) was not important to a considerable minority of knee surgery patients. Pain, especially during rest, was considered very important by both hip (68.2%) and knee (66.5%) surgery patients. Patients who were older, male, experienced overall bad health and psychological health considered many items from the PROMs less important than other patients.DiscussionPatients differ in what they consider important. Health‐care professionals should explore patients’ preferences and discuss which treatment options best fit patients’ preferences. Additionally, if PROMs are used in performance measurement, further research is needed to look at whether and how variation in patient preferences can be taken into account.

BackgroundPatient-reported outcome measures (PROMs) are increasingly used in health care. To capture the patient’s perspective, patient involvement in PROM development is needed. As earlier research showed varying degrees of patient involvement in PROM development, this study aimed to investigate why PROM developers do or do not involve patients, how patients can be successfully involved and what the negative aspects and benefits of patient involvement are.MethodsPROM developers who, according to an earlier scoping review, involved patients in at least two phases of PROM development or did not involve patients at all, were contacted for a telephone interview. The interviews were recorded, transcribed and analysed using a general inductive approach.ResultsFrom the PROM developers who involved patients, 21 developers were interviewed and three answered questions via e-mail. Most developers considered patient involvement necessary to create a valid questionnaire and relied on guidelines, personal experience and practical considerations for choosing a qualitative method. Negative aspects of patient involvement were mainly time investment and budget impact. One developer who did not involve patients was interviewed. Two developers sent back answers via e-mail. These developers did not involve patients because of limited resources or because no benefits were expected.ConclusionAlthough PROM developers agree that patient involvement is necessary, a lack of resources can be a stumbling block. Most developers rely on guidelines, personal experience or practical considerations for choosing a qualitative method. Although this may be a good place to start, to optimize patient involvement developers should explicitly think about which methods would suit their study.

Additional research is needed to provide insight in how to increase oncologists' assistance, while taking into account children's and parents' preferences concerning SDM.

BackgroundClinical guidelines advise GPs in England which patients warrant an urgent referral for suspected cancer. This study assessed how often GPs follow the guidelines, whether certain patients are less likely to be referred, and how many patients were diagnosed with cancer within 1 year of non-referral.MethodsWe used linked primary care (Clinical Practice Research Datalink), secondary care (Hospital Episode Statistics) and cancer registration data. Patients presenting with haematuria, breast lump, dysphagia, iron-deficiency anaemia, post-menopausal or rectal bleeding for the first time during 2014–2015 were included (for ages where guidelines recommend urgent referral). Logistic regression was used to investigate whether receiving a referral was associated with feature type and patient characteristics. Cancer incidence (based on recorded diagnoses in cancer registry data within 1 year of presentation) was compared between those receiving and those not receiving referrals.Results48 715 patients were included, of which 40% (n=19 670) received an urgent referral within 14 days of presentation, varying by feature from 17% (dysphagia) to 68% (breast lump). Young patients (18–24 vs 55–64 years; adjusted OR 0.20, 95% CI 0.10 to 0.42, p<0.001) and those with comorbidities (4 vs 0 comorbidities; adjusted OR 0.87, 95% CI 0.80 to 0.94, p<0.001) were less likely to receive a referral. Associations between patient characteristics and referrals differed across features: among patients presenting with anaemia, breast lump or haematuria, those with multi-morbidity, and additionally for breast lump, more deprived patients were less likely to receive a referral. Of 29 045 patients not receiving a referral, 3.6% (1047) were diagnosed with cancer within 1 year, ranging from 2.8% for rectal bleeding to 9.5% for anaemia.ConclusionsGuideline recommendations for action are not followed for the majority of patients presenting with common possible cancer features. A significant number of these patients developed cancer within 1 year of their consultation, indicating scope for improvement in the diagnostic process.