BACKGROUND Supportive care is currently the only 'therapy' that can be offered to women with unexplained recurrent miscarriage (RM). What these women themselves prefer as supportive care in their next pregnancy has never been substantiated. Therefore the aim of this study was to explore what women with unexplained RM prefer as supportive care during their next pregnancy. METHODS We performed explorative, semi-structured, in-depth interviews. The interviews were performed with 15 women with unexplained RM who were actively seeking conception. All interviews were conducted by telephone. The interviews were fully transcribed and two researchers independently identified text segments from the transcribed interviews and categorized them in the appropriate domain. RESULTS Women identified 20 different supportive care options; 16 of these options were preferred for their next pregnancy. Examples of the preferred supportive care were early and frequently repeated ultrasounds, βHCG monitoring, practical advice concerning life style and diet, emotional support in the form of counselling, a clear policy for the upcoming 12 weeks and medication. The four supportive care options that were not preferred by the women were admittance to a hospital ward at the same gestational age as previous miscarriages, Complementary Alternative Medicine, ultrasound every other day and receiving supportive care from their general practitioner. CONCLUSIONS Our study identified several relevant preferences for supportive care in women with unexplained RM. Many of these can be offered by the gynaecologist and will help in guaranteeing high-quality patient-centred care.
BackgroundNumerous studies have indirectly demonstrated changes in the content of respondents' QoL appraisal process over time by revealing response-shift effects. This is the first known study to qualitatively examine the assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time. Specific objectives are to examine whether the content of each distinct cognitive process underlying QoL appraisal is (dis)similar over time and whether patterns of (dis)similarity can be discerned across and within patients and/or items.MethodsWe conducted cognitive think-aloud interviews with 50 cancer patients prior to and following radiotherapy to elicit cognitive processes underlying the assessment of 7 EORTC QLQ-C30 items. Qualitative analysis of patients' responses at baseline and follow-up was independently carried out by 2 researchers by means of an analysis scheme based on the cognitive process models of Tourangeau et al. and Rapkin & Schwartz.ResultsThe interviews yielded 342 comparisons of baseline and follow-up responses, which were analyzed according to the five cognitive processes underlying QoL appraisal. The content of comprehension/frame of reference changed in 188 comparisons; retrieval/sampling strategy in 246; standards of comparison in 152; judgment/combinatory algorithm in 113; and reporting and response selection in 141 comparisons. Overall, in 322 comparisons of responses (94%) the content of at least one cognitive component changed over time. We could not discern patterns of (dis)similarity since the content of each of the cognitive processes differed across and within patients and/or items. Additionally, differences found in the content of a cognitive process for one item was not found to influence dissimilarity in the content of that same cognitive process for the subsequent item.ConclusionsThe assumption of consistency in the content of the cognitive processes underlying QoL appraisal over time was not found to be in line with the cognitive processes described by the respondents. Additionally, we could not discern patterns of (dis)similarity across and within patients and/or items. In building on cognitive process models and the response shift literature, this study contributes to a better understanding of patient-reported QoL appraisal over time.
Objective (1) To explore the reasons for not seeking help for severe pelvic floor symptoms after gynaecological cancer treatment. (2) To determine the willingness to undergo treatment for these symptoms. (3) To invite suggestions to improve outpatient care.Design Qualitative study using semistructured interviews.Setting Vulvar, endometrial or cervical cancer survivors treated in the Academic Medical Centre, Amsterdam, the Netherlands between1997 and 2007.Population Purposively selected sample from 138 eligible respondents to pelvic floor-related questionnaires, who were severely bothered by their symptoms (>75th percentile of domain sum score of questionnaires) and had not sought medical help.Methods After each semistructured interview, a checklist with reasons for not seeking help was complemented with newly mentioned reasons. The interviews were stopped when data saturation was accomplished, i.e. three consecutive interviewees had not revealed new reasons. The interviews were analysed by two researchers independently.Main outcome measure Help-seeking behaviour for bothersome pelvic floor symptoms.Results Fifteen interviews were conducted. Most reported reasons for not seeking help were that women found their symptoms bearable in the light of their cancer diagnosis and lacked knowledge about possible treatments. Seven women were willing to undergo treatment. Eleven women stated that care should be improved, specifically by timely referral to pelvic floor specialists and additional care by oncology nurses.Conclusions There is a need for standardised attention to adverse effects on pelvic floor function after cancer treatment. This could be realised by quantifying symptoms using questionnaires, standardised attention for such symptoms by gynaecological oncologists or oncology nurses, and timely referral to pelvic floor specialists of women with bothersome pelvic floor symptoms.Keywords Cancer survivors, help-seeking behaviour, pelvic floor symptoms, post-treatment care, qualitative methods.Please cite this paper as: Hazewinkel M, Sprangers M, Taminiau-Bloem E, van der Velden J, Burger M, Roovers J. Reasons for not seeking medical help for severe pelvic floor symptoms: a qualitative study in survivors of gynaecological cancer.
Background The thentest design aims to detect and control for recalibration response shift. This design assumes (1) more consistency in the content of the cognitive processes underlying patients’ quality of life (QoL) between posttest and thentest assessments than between posttest and pretest assessments; and (2) consistency in the time frame and description of functioning referenced at pretest and thentest. Our objective is to utilize cognitive interviewing to qualitatively examine both assumptions.MethodsWe conducted think-aloud interviews with 24 patients with cancer prior to and after radiotherapy to elicit cognitive processes underlying their assessment of seven EORTC QLQ-C30 items at pretest, posttest and thentest. We used an analytic scheme based on the cognitive process models of Tourangeau et al. and Rapkin and Schwartz that yielded five cognitive processes. We subsequently used this input for quantitative analysis of count data.ResultsContrary to expectation, the number of dissimilar cognitive processes between posttest and thentest was generally larger than between pretest and posttest across patients. Further, patients considered a range of time frames when answering the thentest questions. Moreover, patients’ description at the thentest of their pretest functioning was often not similar to that which was noted at pretest. Items referring to trouble taking a short walk, overall health and QoL were most often violating the assumptions.ConclusionsBoth assumptions underlying the thentest design appear not to be supported by the patients’ cognitive processes. Replacing the conventional pretest–posttest design with the thentest design may simply be replacing one set of biases with another.Electronic supplementary materialThe online version of this article (doi:10.1007/s11136-015-1175-4) contains supplementary material, which is available to authorized users.
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