ShareHeart: A patient journey map of patients with ischemia and non-obstructive coronary artery disease based on qualitative research.

AIMS AND OBJECTIVES: To visualise the health care experiences and needs of patients with ischemia with non-obstructive coronary arteries in a patient journey map. As such, future design challenges can be provided, and it can be used for future healthcare optimization. BACKGROUND: Ischemia with non-obstructive coronary arteries is a chronic cardiac condition caused by vascular dysfunctions. Ischemia with non-obstructive coronary arteries is often unrecognised, significantly impairs daily functioning, and is more prevalent among women. Patients' experiences remain unexplored, and a clear patient-centered care pathway is lacking. DESIGN: A qualitative interpretative research design was performed and the standards for reporting qualitative research (SRQR) has been used. METHODS: In total, 36 women were included and participated in eight semi-structured focus group interviews. Thematic analysis was used, and identified themes were further classified using 'patient journey mapping.' Additionally, Picker's 'eight principles of patient-centered care' were linked to the results and integrated in the patient journey map. RESULTS: Participants experienced a lack of familiarity with the specific cardiac condition by healthcare providers, repeated hospitalisation, testing and referrals, shortage of specialised cardiologists, and feelings of not being heard. In addition, needs for a multidisciplinary treatment program (including physical and psychological support), better information provision, and an easily accessible contact person were expressed. CONCLUSIONS: The resulting patient journey map shows how patients experienced and interacted with the current healthcare system. Overall, the results show a complex and long healthcare pathway and important themes for healthcare experiences and needs were identified. Future research could focus on the development and implementation of a patient-centered evidence-based clinical pathway optimising experiences and quality of life. RELEVANCE TO CLINICAL PRACTICE: The visual tool can help health care professionals, policy makers, and researchers improve healthcare provision which is patient-centered and tailored to the preferences of patients with ischemia with non-obstructive coronary arteries.

The Relationship Between Psychological Aspects and Trajectories of Symptoms in Total Knee Arthroplasty and Total Hip Arthroplasty.

BACKGROUND: This study aimed to examine different trajectories of physical symptoms in hip and knee arthroplasty patients from presurgery to 1 year postsurgery and relate this to preoperative anxiety and depressive symptoms. METHODS: Patients (N = 345) completed the Hip injury and Osteoarthritis Outcome Score or the Knee injury and Osteoarthritis Outcome Score to examine their preoperative and postoperative pain, stiffness, and function, presurgery, and 3, 6, and 12 months postsurgery. Presurgery anxiety and depressive symptoms were assessed using the 7-item Generalized Anxiety Disorder Scale and the 9-item Patient Health Questionnaire. Latent trajectory analysis was used to identify different subgroups in trajectories. The step-3 method was used to assess subgroup characteristics. RESULTS: The effect of time on pain, function, and stiffness was different between subgroups of patients. Knee patients belonged mainly to classes with least improvement. Least improvement in pain was characterized by a combination of high levels of both anxiety and depressive symptoms. Anxiety and depressive symptoms were independently related to less reduction in stiffness while little improvement in function was characterized by higher depressive symptoms. CONCLUSION: The results of this study indicate that anxiety and depressive symptoms were significantly, but differently, related to the distinct physical symptoms examined.

Characterizing patients' expectations in hip and knee osteoarthritis.

PURPOSE: Previous research reported conflicting findings regarding the association of sociodemographic and clinical variables with expectations for surgical outcomes. The current study aimed to identify and characterize different subgroups of osteoarthritis patients with respect to amount and level of expectations, and to examine factors that are associated with expectations. METHODS: Hip and knee patients (n = 287) completed a questionnaire 1 week post consultation. Linear regression analyses were performed to examine whether sociodemographic (e.g., age, sex) and clinical factors (e.g., pain, function) were associated with expectations. Latent class analysis (LCA) was used to identify different subgroups and the step 3 method was conducted to assess subgroup characteristics. RESULTS: Mean age of patients was 70 years (SD = 8) and 57% of patients was female. Most improvement was expected in walking ability and pain relief. Higher expectations were associated with younger age, male sex, and functional disability. Both hip and knee patients could be classified into three subgroups. These subgroups differed significantly on pain and other symptoms, and functional disability. CONCLUSION: Both hip and knee patients reported pain and other osteoarthritis symptoms and functional disability and consequently had high expectations in these areas for treatment outcomes. Higher expectations were characterized by more pain, more symptoms and more functional disability. These insights could guide physicians in the discussion of expectations during consultation.

Unravelling sexual care in chronically ill patients: the perspective of GP practice nurses; Health Service Research.

BACKGROUND: Assessment of sexual health is important in chronically ill patients, as many experience sexual dysfunction (SD). The general practice nurse (GPN) can play a crucial part in addressing SD. OBJECTIVE: The aim of this cross-sectional study was to examine to which extent GPNs discuss SD with chronically ill patients and what barriers may refrained them from discussing SD. Furthermore, we examined which factors had an association with a higher frequency of discussing SD. METHODS: A cross-sectional survey using a 48-item questionnaire was send to 637 GPNs across the Netherlands. RESULTS: In total, 407 GPNs returned the questionnaire (response rate 63.9%) of which 337 completed the survey. Two hundred and twenty-one responding GPNs (65.6%) found it important to discuss SD. More than half of the GPNS (n = 179, 53.3%) never discussed SD during a first consultation, 60 GPNs (18%) never discussed SD during follow-up consultations. The three most important barriers for discussing SD were insufficient training (54.7%), 'reasons related to language and ethnicity' (47.5%) and 'reasons related to culture and religion' (45.8%). More than half of the GPNs thought that they had not enough knowledge to discuss SD (n = 176, 54.8%). A protocol on addressing SD would significantly increase discussing during SD. CONCLUSIONS: This study indicates that GPNs do not discuss SD with chronically ill patients routinely. Insufficient knowledge, training and reasons related to cultural diversity were identified as most important reasons for this practice pattern. Implementation of training in combination with guidelines on SD in the general practice could improve on the discussing of sexual health with chronic patients.

A High Proportion of Patients Have Unfulfilled Sexual Expectations After TKA: A Prospective Study.

BACKGROUND: Most patients have high expectations about restoration of the knee function after TKA, expecting a more active life after retirement. However, 20% to 30% of patients report that their expectations are not met postoperatively. Among those unmet expectations may be the anticipation to engage in sexual activity after surgery, but few studies have evaluated sexual activity after arthroplasty. QUESTIONS/PURPOSES: In this study, our purposes were (1) to evaluate the anticipation and the fulfillment of sexual activity after TKA in men and women, and (2) to identify prognostic factors for the fulfillment of anticipated postoperative sexual activity. METHODS: This was a prospective, multicenter study of all 1371 patients scheduled for TKA between June 2012 and July 2015. The study was part of the Longitudinal Leiden Orthopaedics Outcomes of Osteoarthritis Study (LOAS). After screening according to LOAS inclusion criteria, 1213 respondents remained. Our primary study endpoint was whether sexual expectations were met 1 year after TKA; we used the sexual-activity-expectation question from the Hospital for Special Surgery (HSS) Knee Replacement Expectations Survey, which allows the patient to score the result on a 5-point scale. To assess postoperative fulfillment of sexual activity 1 year after TKA, we asked the patient to score the current status of sexual activity on the same 5-point scale: 1 (back to normal), 2 (large improvement), 3 (moderate improvement), 4 (slight improvement), and 5 (does not apply). Patients with incomplete data on the preoperative expectation- and postoperative fulfillment-question of sexual activity were excluded, leaving 71% (866 of 1213) patients for analysis. The difference between the pre- and postoperative scores determined whether expectations of sexual activity were unfulfilled (lower than expected) or fulfilled/exceeded (neutral or higher than expected). Pre- and postoperatively, the Knee Injury and Osteoarthritis Outcome Score (KOOS), the Short Form-12 Mental and Physical Component Summary scores (SF-12 MCS and SF-12 PCS), the EuroQoL-5 Dimensions (EQ-5D), and the EQ-5D VAS scale were used. Multivariate regression models were used for analysis. RESULTS: Preoperatively, 54% patients (467 of 866) anticipated postoperative sexual activity after recovery from surgery. Both genders showed that the proportion who anticipated "back to normal" sexual activity decreased with higher age. Likewise, postoperative fulfillment of anticipated sexual activity was found in 58% (111 of 191 for men; 159 of 276 for women). Younger women (younger than 65 years of age) experienced fulfillment more often compared with younger men. A positive postoperative change in functional and health status was associated with fulfilled/exceeded scores of patients anticipating postoperative sexual activity. A better preoperative health status, the EQ-5D VAS score (odds ratio [OR] 1.02 [95% CI 1.01 to 1.03]; p = 0.006), was associated with a higher likelihood of fulfillment of anticipated postoperative sexual activity. CONCLUSION: In both men and women, two of five patients who anticipated postoperative sexual activity indicated that their expectation of sexual activity was not met 1 year after TKA. These patients had worse functional recovery scores compared with patients who achieved the anticipated level of sexual activity. The latter is associated with functional recovery. Surgeons should be aware that many patients anticipate restoration of normal sexual activity, and that this may be the expectation for patients of all ages and for women and men alike. The results underscore the need for more qualitative research to understand this topic in greater depth. LEVEL OF EVIDENCE: Level II, therapeutic study.

High Pre-Operative Expectations Precede Both Unfulfilled Expectations and Clinical Improvement After Total Hip and Total Knee Replacement.

BACKGROUND: This prospective study aimed to examine whether patients' and physicians' outcome expectations were related to subjective (ie, fulfillment of expectations) and objective outcomes (ie, change in pain and function) in hip and knee arthroplasty patients up to 6 months post-surgery. METHODS: Patients' (N = 395) and physicians' outcome expectations were examined 1 week post-consultation. Patients' post-operative functional status and the extent of fulfillment of expectations were examined 5 weeks, 3 months, and 6 months post-surgery. Patients and physicians completed the Hospital for Special Surgery Hip/Knee Replacement (Fulfillment) Expectations Survey. Patients completed the Hip/Knee injury and Osteoarthritis Outcome Score. Linear regression analyses were performed to examine the relationship between physicians' expectations and patients' change in pain and function and extent of fulfillment of expectations, and a possible mediated effect of patients' pre-operative expectations. RESULTS: Patients' high expectations were consistently associated with better objective outcomes (ie, change in pain and function). Yet, high expectations in patients were also negatively related to subjective outcomes (ie, the extent of fulfillment of expectations). Physicians' expectations were only positively associated with objective improvement in knee patients, and not in hip patients. Additionally, knee patients' expectations partly mediated the relationship between physicians' expectations and change in pain and function, 6 months post-surgery. CONCLUSION: Although patients' high expectations were associated with better objective outcomes, improvement was still less than patients expected. Thus, patients often have too high expectations of outcomes of surgery. In addition, physicians were able to influence patients' expectations and to change experienced knee patients' outcomes.

Treatment-Related Sexual Side Effects From the Perspective of Partners of Men With Prostate Cancer.

A cross-sectional survey was performed among partners and men who received treatment for prostate cancer to investigate whether demographic and clinical characteristics are associated with the extent of how difficult partners found it dealing with sexual side effects and the degree of having experienced sexual problems after treatment. Moreover, an aim was to determine whether sexual side effects have an impact on the relationship. A total of 171 partners were included. In all, 104 men (70.7%) experienced an increase in erectile complaints after treatment. Almost half of partners of men with an increase in erectile complaints (63.6%, n = 63) found it difficult to deal with sexual side effects and 63.5% (n = 66) experienced sexual problems. Partners with lower education levels experienced fewer sexual problems than partners with higher education levels (p < .001). Furthermore, no significant associations were found on demographic characteristics, number of comorbidities, clinical characteristics (prostate-specific antigen level; tumor, node, and metastasis staging; Gleason grading), and type of treatment. The majority of men (58.4%, n = 59) and partners (62.5%, n = 65) indicated to not have experienced the impact of sexual side effects on their relationship.

Frequency of low-grade adverse events and quality of life during chemotherapy determine patients' judgement about treatment in advanced-stage thoracic cancer.

PURPOSE: In lung cancer, the preservation of well-being is warranted given the limited prognosis. Chemotherapy may negatively influence health-related quality of life (HRQoL) due to adverse events. However, patients' judgement about this negative impact is not well understood. We examined the relationship between expectations, feelings about side effects, and satisfaction with therapy and (HR)QoL in advanced-stage thoracic cancer and investigated which of these factors has the highest impact on (HR)QoL. METHODS: Sixty-nine patients completed the Cancer Therapy Satisfaction Questionnaire (CTSQ), the World Health Organization Quality of Life-BREF (WHOQOL-BREF), and the European Organization for Research and Treatment of Cancer Quality of Life Questionnaire-Core 30 (EORTC QLQ-C30). Multiple regression analyses were performed to investigate the relation of the CTSQ domains (i.e., expectations of therapy, feelings about side effects, satisfaction with therapy) with (HR)QoL and simple regression analyses to identify the factors of the CTSQ domain that was most often associated with (HR)QoL. RESULTS: Feelings about side effects were associated with the (HR)QoL domain/scale scores (i.e., WHOQOL-BREF domains: ß = 0.36 to 0.58; EORTC QLQ-C30 scales: ß = 0.33 to 0.61) except social relationships of the WHOQOL-BREF. Low-grade adverse events were related to feelings about side effects (ß = - 0.326; P = 0.007). CONCLUSIONS: Patients experiencing negative feelings about side effects have worse (HR)QoL. Additional care should be provided to prevent low-grade adverse events.

Investigating the effect of a symposium on sexual health care in prostate cancer among Dutch healthcare professionals.

AIMS AND OBJECTIVES: To investigate whether a symposium aimed at healthcare professionals in the uro-oncological field changes knowledge, competence and general practice regarding sexual dysfunction after prostate cancer treatment. BACKGROUND: Sexual dysfunction is not frequently discussed by healthcare professionals; lack of knowledge and training are two of the most often reported barriers. Provision of additional training could improve knowledge, competence and general practice of healthcare professionals. DESIGN: Two questionnaires were used in this pre-post study to determine knowledge, competence and general practice at the time of the symposium and six months afterwards. METHODS: In order to perform repeated measures to analyse alterations among participating healthcare professionals (n = 55), the McNemar's test was used. A STROBE checklist was completed. RESULTS: Seventy-three per cent (n = 40) stated that not enough attention was paid to prostate cancer-related sexual dysfunction during their education. Nurses felt significantly less competent in discussing sexual function, advising on sexual dysfunction and actively inquiring sexual complaints compared to other healthcare professionals. After the symposium, sexual dysfunction was significantly more often discussed. No significant effects were found on knowledge on sexual dysfunction, knowledge on treatment of sexual dysfunction, competence in discussing sexual function, advising on sexual dysfunction, actively inquiring sexual complaints and rate of referral. Tools needed to address sexual dysfunction concerned written information materials (75.5%) and a website containing adequate information (56.6%). CONCLUSIONS: The symposium had no significant influence on knowledge, competence and rate of referral in men with sexual dysfunction after prostate cancer treatment. However, sexual dysfunction was more frequently discussed after the symposium, so increase of awareness of consequences of prostate cancer treatment was achieved. RELEVANCE TO CLINICAL PRACTICE: Consequences of prostate cancer treatment to sexual function should be taken in consideration in daily practice; written information materials and a website containing adequate information were indicated as valuable resources to address sexual dysfunction in routine consultations.

Satisfactory results of a psychometric analysis and calculation of minimal clinically important differences of the World Health Organization quality of life-BREF questionnaire in an observational cohort study with lung cancer and mesothelioma patients.

BACKGROUND: To determine the psychometric properties and minimal clinically important differences (MCIDs) of the World Health Organization Quality of Life-BREF (WHOQOL-BREF) in advanced stage lung cancer patients. METHODS: Patients (n = 153) completed the WHOQOL-BREF and the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire Core 30 (EORTC QLQ-C30). Confirmatory factor analysis (CFA) was performed and reliability and construct validity determined. MCIDs were estimated with two distribution-based methods (0.5 standard deviation (SD) and 1 standard error of measurement (1 SEM)). RESULTS: CFA confirmed WHOQOL-BREF domain structure. All domains demonstrated good internal consistency (α > 0.70), except Social Relationships (α = 0.57). Nineteen of the 24 WHOQOL-BREF items had correlations of ≥ 0.40 with their intended domain. Four items had higher correlations with a domain other than their intended domain. Moderate to strong correlations were observed for corresponding domains of the two questionnaires, except for the social domains (r = 0.07). For 0.5 SD, MCIDs ranged from 0.88 to 1.55, and for 1 SEM MCIDs ranged from 1.76 to 2.72. CONCLUSIONS: The WHOQOL-BREF has satisfactory psychometric properties in patients with advanced stage lung cancer, whereas the observed MCIDs provide a method for interpretation of scores.

Suitable sexual health care according to men with prostate cancer and their partners.

PURPOSE: To determine which health care provider and what timing is considered most suitable to discuss sexual and relational changes after prostate cancer treatment according to the point of view of men and their partners. METHODS: A cross-sectional survey was conducted among men diagnosed with prostate cancer or treated after active surveillance, who received laparoscopic radical prostatectomy, brachytherapy, intensity-modulated radiotherapy, and/or hormonal therapy. If applicable, partners were included as well. RESULTS: In this survey, 253 men and 174 partners participated. Mean age of participating men was 69.3 years (SD 6.9, range 45-89). The majority (77.8%) was married and average length of relationship was 40.3 years (SD 14.1, range 2-64). Out of 250 men, 80.5% suffered from moderate to severe erectile dysfunction. Half of them (50.2%, n = 101) was treated for erectile dysfunction and great part was partially (30.7%, n = 31) up to not satisfied (25.7%, n = 26). Half of the partners (50.6%, n = 81) found it difficult to cope with sexual changes. A standard consultation with a urologist-sexologist to discuss altered sexuality is considered preferable by 74.7% (n = 183). Three months after treatment was the most suitable timing according to 47.6% (n = 49). CONCLUSIONS: During follow-up consultations, little attention is paid to the impact of treatment-induced sexual dysfunction on the relationship of men with prostate cancer and their partners. A standard consultation with a urologist-sexologist 3 months after treatment to discuss sexual and relational issues is considered as most preferable.

Sexual care for patients receiving dialysis: A cross-sectional study identifying the role of nurses working in the dialysis department.

AIMS: To explore the role of nurses in the dialysis department in providing sexual care to patients receiving dialysis. BACKGROUND: Sexual health is not self-evident for patients undergoing dialysis; 70% experience sexual dysfunction. Nevertheless, sexual care is often not provided. DESIGN: A national cross-sectional survey. METHODS: Questionnaires (n = 1211) were sent to employees of 34 dialysis centres from January-May 2016. Descriptive statistics and statistical tests were used to describe and interpret data. RESULTS: The response rate was 45.6%. Three-quarter of nurses discussed sexual dysfunction with less than half of their patients. Main barriers for discussing were based on language and ethnicity (57.3%), culture and religion (54.1%) and the older age of the patient (49.7%). Eighteen per cent of nurses had sufficient knowledge on sexual dysfunction, competence was present in 51.2% of nurses and 68.3% indicated a need for training. Forty-three per cent knew about guidelines on sexual care by renal care providers. Nurses who rated their knowledge or competence higher or who were aware of guidelines discussed sexuality more often. The accountability for discussing sexuality was appointed to nephrologists (82.8%) and their own group of professionals (66.3%). Nurses referred 1.16% of their patients to sexual care providers. CONCLUSION: Dialysis nurses do not consistently address patients' sexuality, although they feel accountable to do so. This seems due to self-imposed insufficient knowledge, cultural barriers and organizational problems. Study findings imply that current situation could benefit from guidelines, additional training, a private moment to discuss sexual dysfunction and adequate referral systems to specialized care providers.

Discussing sexuality with patients with Parkinson's disease: a survey among Dutch neurologists.

Sexual functioning is often impaired in patients with Parkinson's disease (PD) and may affect quality of life of patients and their spouse. However, little is known about the practice patterns of neurologists with regard to discussing sexuality in this field. The aim of this cross-sectional study was to evaluate to what extent neurologists discuss sexuality with PD patients. A 22-item questionnaire was sent to 139 neurologists specializing in PD. The survey contained questions about their attitudes, knowledge, and practice patterns with respect to sexual dysfunction (SD) in patients with PD. The response rate of the survey was 66.9%. Most participants (56.8%) stated that they address sexuality in less than half of their PD patients. High age of patients (42.0%), insufficient consultation time (37.5%), and a lack of patients' initiative to raise the topic themselves (36.4%) were frequently reported barriers towards discussing sexuality. The majority of participants considered that discussing sexuality is a responsibility that lay with neurologists (85.2%), nurses (73.9%), and patients (72.7%). One quarter of the neurologists reported to have insufficient or no knowledge on SD. The majority of participants regarded screening for SD important or slightly important (85.2%). A large proportion of Dutch neurologists specializing in PD do not routinely discuss sexuality with their PD patients. Sexual healthcare in PD patients may benefit from time-efficient tools and agreements on who is responsible for discussing SD. Furthermore, recommendations in PD guidelines on screening and managing SD should be adapted to fit everyday practice.

The Discussion of Sexual Dysfunction Before and After Kidney Transplantation From the Perspective of the Renal Transplant Surgeon.

INTRODUCTION: Sexual dysfunction (SD) is a common problem in chronic kidney disease (CKD) and endures in 50% of patients after kidney transplantation (KTx), diminishing patients' expectations of life after KTx. Unfortunately, SD is often ignored by renal care providers. Research questions as part of a research project among all renal care providers, transplant surgeons' perspectives were obtained on sexual health care for KTx recipients, including their opinion on who should be accountable for this care. In addition, surgeons' practice and knowledge regarding SD were evaluated. DESIGN: A 39-item questionnaire was sent to all Dutch surgeons and residents specialized in KTx (n = 47). RESULTS: Response was 63.8%. None of the respondents discussed SD with their patients, before or after surgery. Most important barrier was that surgeons do not feel accountable for it (73.9%); 91.7% thought this accountability should lie with the nephrologist. Another barrier was insufficient knowledge (39.1%). In 75% of the respondents, (almost) no knowledge regarding SD was present and 87.5% noticed education on SD was insufficient during residence training. DISCUSSION: Dutch renal transplant surgeons rarely discuss SD with their patients with CKD, as they do not feel accountable for it; this accountability was appointed to the nephrologist. Knowledge and education regarding SD were found insufficient in enabling surgeons and for some it reflects in barriers toward discussing SD. Results emphasize that accountability for providing sexual health care to patients with CKD should lie elsewhere; however, surgeons could briefly provide information on sexual health after KTx, so unfulfilled expectations may be prevented.

Patient sexual function and hip replacement surgery: A survey of surgeon attitudes.

PURPOSE: To explore practises of orthopaedic surgeons (and residents) in addressing sexual function (SF) in patients before and after total hip arthroplasty (THA). METHODS: A 26-item questionnaire was sent to health professionals (n = 849); 526 (62.0%) responses were included in the analyses. RESULTS: About 78% of the respondents (77.5%) almost never addressed SF. The most mentioned reason was that "patients do not ask" (47.4%) followed by "I am not aware of possible needs" (38.6%). SF was even less discussed (25.9%) in elderly patients (>60 years). The beneficial effect of THA on SF was rated the highest in retired surgeons (p ≤ 0.001), in which male surgeons scored higher than female surgeons (p = 0.002). The importance of sexual dificulties (SD) in the decision to undergo surgery was rated lowest by residents (p = 0.020). Rating the risk for dislocation varied between occupations (p = 0.008) and gender (p = 0.016), female surgeons rated highest (median 5); 54.1% indicated the orthopaedic surgeon is responsible for providing information about the safe resumption of sexual activity. CONCLUSIONS: Surgeons show little attention to SF related issues in THA patients, which seems not in accordance to patients' needs. Addressing SF increases throughout a surgeon's career. There were divergent views and there is no "common advice" about the safe resumption of sexual activity. The results emphasize the need for guidelines and training in order to encourage addressing SF both, before and after THA.

Sexual, marital, and general life functioning in couples coping with colorectal cancer: a dyadic study across time.

OBJECTIVES: This study evaluated the following: (a) levels of sexual, marital, and general life functioning for both patients and partners; (b) interdependence between both members of the couple; and (c) longitudinal change in sexual, marital, and general life functioning and longitudinal stress-spillover effects in these three domains from a dyadic perspective. METHODS: Couples (n = 102) completed the Maudsley Marital Questionnaire preoperatively and 3 and 6 months postoperatively. Mean scores were compared with norm scores. A multivariate general linear model and a multivariate latent difference score - structural equation modeling (LDS-SEM), which took into account actor and partner effects, were evaluated. RESULTS: Patients and partners reported lower sexual, mostly similar marital, and higher general life functioning compared with norm scores. Moderate to high within-dyad associations were found. The LDS-SEM model mostly showed actor effects. Yet the longitudinal change in the partners' sexual functioning was determined not only by their own preoperative sexual functioning but also by that of the patient. Preoperative sexual functioning did not spill over to the other two domains for patients and partners, whereas the patients' preoperative general life functioning influenced postoperative change in marital and sexual functioning. Health care professionals should examine potential sexual problems but have to be aware that these problems may not spill over to the marital and general life domains. In contrast, low functioning in the general life domain may spill over to the marital and sexual domains. The interdependence between patients and partners implies that a couple-based perspective (e.g., couple-based interventions/therapies) to coping with cancer is needed.

Evaluating quality of life and response shift from a couple-based perspective: a study among patients with colorectal cancer and their partners.

OBJECTIVES: To examine (1) measurement invariance of quality of life (QoL) domains over time for patients with colorectal cancer and partners (i.e., response shift--recalibration, reprioritization, and reconceptualization), (2) between dyad-member measurement invariance and (3) QoL trajectories. METHODS: Participants completed the WHOQOL-Bref preoperative (Time-0) and 3 (Time-1) and 6 months (Time-2) postoperative. A stepwise procedure, using nested factor models, examined the viability of restricting specific model parameters to be equal across measurements and between dyad members. FINDINGS: No reconceptualization and reprioritization was detected, but indications for recalibration were present. Therefore, comparisons were restricted to group-level statistics at factor level. For patients, a decrease in the Physical Health domain occurred at Time-1 (p < 0.001), with partial recovery to baseline at Time-2 (p = 0.055). For partners, factor means in this domain remained constant (p's > 0.05) and were at each time point higher than patients' factor means (p's < 0.05). Patients' and partners' Psychological Health decreased at Time-1 (p's < 0.05), with stabilization at Time-2 (p's > 0.05). Patients and partners' factor means were comparable (p's > 0.05). Patients and partners' Social Relationship factor means decreased at Time-1 (p's < 0.05), which decreased further for patients (p = 0.011) but stabilized for partners (p = 0.214). Partners' factor means were only lower than patients' factor means at Time-1. A similar decrease in the Environmental domain factor means occurred for both patients and partners at Time-1 (p's < 0.05), with stabilization at Time-2 (p's > 0.05). CONCLUSION: Since both patients and partners are affected by the patients' disease and treatment, we recommend that attention is paid to the couple instead of solely the patient.

Measuring the health-related quality of life and sexual functioning of patients with rectal cancer: does type of treatment matter?

The literature on the health-related quality of life (HRQOL) after rectal cancer is growing, however, a comparison between patients with nonadvanced disease (NAD), locally advanced rectal cancer (LARC), locally recurrent rectal cancer (LRRC) and a normative population has not been made. Data on the sexual functioning of patient groups is also scarce. We compared (i) the HRQOL of patients with NAD, LARC, or LRRC, with a special focus on sexual functioning and (ii) the HRQOL of the three treatment groups with a normative population. The EORTC QLQ-C30 and QLQ-CR38 were completed by 80 patients with NAD, 292 LARC patients and 67 LRRC patients. The normative population (n = 350) completed the EORTC QLQ-C30 and the Sexual Functioning and Sexual Enjoyment scales of the CR38. LRRC patients reported a lower Physical Function, Social Function, Future Perspective, Sexual Functioning and more Pain compared with LARC and NAD patients. Also, LRRC patients had a worse Body image than NAD patients and a lower Male Sexual Functioning than LARC patients. More than 75% of men and 50% of women were sexually active preoperative, compared with less than 50% and less than 35% postoperative. Male LRRC patients had more problems with erectile or ejaculatory functioning and felt less masculine than NAD or LARC patients. Women did not differ on Lubrication, Dyspareunia and Body Image. About 10% of patients used aids in order to improve erectile functioning (men) or lubrication (women). The treatment groups reported a lower HRQOL and sexual functioning compared with the normative population.

How breast cancer survivors cope with fear of recurrence: a focus group study.

PURPOSE: The aim of this qualitative study was to examine the ways in which breast cancer survivors cope with fear of recurrence. METHODS: Three focus groups were held with breast cancer survivors. Focus group interviews were recorded, transcribed verbatim, and analyzed using qualitative techniques. Coding was done on two levels: styles and strategies. RESULTS: Twenty-seven women participated. The majority of the women (74 %) were a little anxious, and some patients (11 %) were somewhat anxious about the possibility of cancer recurrence. Most women (74 %) indicated to think a few times a month about the possibility of cancer recurrence. Different coping styles were reported, but commonly, women (80 %) reported an emotion-focused coping strategy. About half of the women (49 %) used passive or avoidant coping styles. CONCLUSION: The emotion-focused coping strategy was most commonly used. This information can be used to provide tailored psychosocial care.

The sexual health care needs after colorectal cancer: the view of patients, partners, and health care professionals.

PURPOSE: Sexual dysfunction among patients with colorectal cancer is frequently reported. Studies examining patients' sexual health care needs are rare. We examined the sexual health care needs after colorectal cancer treatment according to patients, partners, and health care professionals (HCPs). Factors that impede or facilitate the quality of this care were identified. METHOD: Participants were recruited from three Dutch hospitals: St. Elisabeth, TweeSteden, and Catharina hospitals. Patients (n = 21), partners (n = 9), and 10 HCPs participated in eight focus groups. RESULTS: It is important to regularly evaluate and manage sexual issues. This does not always occur. Almost all participants reported a lack of knowledge and feelings of embarrassment or inappropriateness as barriers to discuss sexuality. HCPs reported stereotypical assumptions regarding the need for care based on age, sex, and partner status. The HCPs debated on whose responsibility it is that sexuality is discussed with patients. Factors within the organization, such as insufficient re-discussion of sexuality during (long-term) follow-up and unsatisfactory (knowledge of the) referral system impeded sexual health care. The HCPs could facilitate adequate sexual health care by providing patient-tailored information and permission to discuss sex, normalizing sexual issues, and establishing an adequate referral system. It is up to the patients and partners to demarcate the extent of sexual health care needed. CONCLUSIONS: Our findings illustrate the need for patient-tailored sexual health care and the complexity of providing/receiving this care. An adequate referral system and training are needed to help HCPs engage in providing satisfactory sexual health care.