Barriers and facilitators for shared decision-making in oncology inpatient practice: an explorative study of the healthcare providers' perspective.

BACKGROUND: In cancer care, shared decision-making (SDM) is especially relevant as different treatment options have a different impact on prognosis and patients' quality of life. However, evidence suggests that SDM is not routinely practiced. Furthermore, literature is mostly focussed on the outpatient setting. This study explored healthcare providers' perspectives on SDM for oncology inpatients and identified barriers and facilitators. METHOD: In this qualitative study, focus groups and semi-structured interviews were held with five nurses, eleven residents, four oncologists, and two healthcare managers caring for oncology inpatients of the Elisabeth-TweeSteden hospital. RESULTS: Healthcare professionals do not always clearly state when a decision is required. On a patient level, comprehension barriers, language barrier, and distraction by emotions or sickness are recognized as barriers for adequate patient's communication. On a healthcare professional level, having awareness to inform about choices, being able to transfer this information, connecting to the patient, having substantial experience, and a good patient-physician relationship were facilitators. On an organizational, level, time, private rooms, continuity in care, and suboptimal use of the electronic health record were barriers. CONCLUSION: While SDM is recognized and valued, its implementation is inconsistent. Addressing the several barriers found and optimizing the facilitators is imperative. A start could be by raising awareness for SDM in the inpatient setting, adding SDM as part of the care pathway, stating to patients when a decision is required, reporting on the SDM process in the electronic health record, and describing the nurses' role in SDM.

The relation between psychological profiles and quality of life in patients with lung cancer.

OBJECTIVE: Previous studies in patients with lung cancer examined the association between psychological factors with quality of life (QoL), as well as the association between psychological factors with sociodemographic and medical characteristics. However, knowledge about the impact of combinations of psychological characteristics on QoL is still lacking. Therefore, the current study aimed to identify psychological profiles, covering multiple psychological factors. Additionally, the association between these profiles with QoL and with sociodemographic and medical characteristics was explored. METHODS: Patients with lung cancer (n = 130, mean age = 68.3 ± 8.6 years; 49% men) completed questionnaires focusing on sociodemographic information, anxiety and depressive symptoms (HADS), coping (COPE-easy), perceived social support (PSSS), and QoL (WHOQOL-BREF). Medical information was extracted from patients' medical records. A step-3 latent profile analysis was performed to identify the psychological profiles. Multinomial logit models were used to explore the medical and sociodemographic correlates of the profiles and the relation with QoL. RESULTS: Four psychological profiles were identified as follows: (1) anxious, extensive coping repertoire (33%); (2) depressive, avoidant coping (23%); (3) low emotional symptoms, active/social coping (16%); and (4) low emotional symptoms, limited coping repertoire (29%). QoL in profile 1 (QoL = 6.59) was significantly different from QoL in profile 3 (QoL = 8.11, p = .001) and profile 4 (QoL = 7.40, p = .01). QoL in profile 2 (QoL = 6.43) was significantly different from QoL in profile 3 (QoL = 8.11, p = .003) and profile 4 (QoL = 7.40, p = .02). Regarding QoL, no other significant differences were found. Sociodemographic and medical characteristics were not distinctive for the profiles (all p values > .05). CONCLUSION: Determining psychological profiles of patients with lung cancer in an early stage provides information that may be helpful in aligning care with patients' unique needs, as it will help in more adequately selecting those patients who are in need of psychological screening and/or psychological treatment as compared with determining scores on single psychological factors.

Psychosocial consequences of diagnosis and treatment of lung cancer and evaluation of the need for a lung cancer specific instrument using focus group methodology.

OBJECTIVES: Patients with lung cancer (LC) have high rates of psychosocial symptoms and international guidelines recommend regular psychosocial screening during treatment. This study evaluates psychosocial consequences of diagnosis and treatment of LC in a qualitative way and evaluates the need for a LC specific screening instrument. METHODS: Focus group meetings with LC patients were divided by treatment type. Patients discussed psychological and social consequences of diagnosis and treatment. Major themes were identified using content analysis. Themes were re-evaluated in a subsequent focus group, in accordance with the European Organization for Research and Treatment of Cancer (EORTC) guidelines. RESULTS: Patients reported a range of psychosocial consequences, such as frustration due to physical limitations, fear of recurrence, sadness of leaving behind partner and children, and disappointing social support. Patients treated with palliative intent specifically indicated insecurities about the future. Patients from all treatment modalities indicated a need for family support during treatment. No themes specific to LC arose. CONCLUSIONS: Patients with LC are coping with a range of psychosocial consequences, independent of the type of treatment they receive. Fear of recurrence/metastasis and insecurity about the future were more prominent in patients receiving palliative chemotherapy. Themes were not specific to LC; therefore, a screening instrument specific for the LC population does not seem required. However, the current standard for screening is considered insufficiently sensitive and a stepped screening approach with specific screening tools and a clinical interview is suggested as usual care.

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.

Does extended surgery influence health-related quality of life in patients with rectal cancer?

BACKGROUND: In locally advanced rectal cancer, an extended resection peripheral to the mesorectal fascia is needed to achieve a radical resection. The influence of extended resections on health-related quality of life is unclear. OBJECTIVE: Differences in health-related quality of life and sexuality between patients receiving standard surgery and patients receiving extended surgery were examined, with a focus on age. DESIGN: Patients operated on for rectal cancer between 2000 and 2010 were selected from a database and invited to complete the European Organization for Research and Treatment of Cancer quality-of-life questionnaires (C30 and ColoRectal 38). SETTINGS: All patients were treated at the Catharina Hospital, Eindhoven, the Netherlands. PATIENTS: All patients received total mesorectal excision surgery or extended surgery for rectal cancer. MAIN OUTCOME MEASURES: Health-related quality of life and sexual activity was compared between patients treated with total mesorectal excision surgery and extended surgery and further stratified by age at the time of surgery (<70 and ≥70). RESULTS: Two hundred twenty-nine (64.1%) patients with standard surgery and 128 (35.9%) patients treated with extended resections responded. Extended surgery in patients <70 years resulted in lower body image compared with patients <70 years receiving standard surgery. Patients ≥70 years had lower sexual function and more male sexual dysfunction than patients <70 years undergoing standard surgery. In all groups, sexual activity dropped significantly after treatment. LIMITATIONS: No information was available of the patients' health-related quality of life before treatment except for the retrospective question about sexual activity. CONCLUSIONS: This study showed no major differences between patients undergoing total mesorectal excision surgery and those receiving extended surgery, with the exception of body image, which was significantly lower in patients <70 years undergoing extended surgery. In all patient groups, treatment for rectal cancer influenced sexual activity dramatically. Awareness of the impact of surgery on health-related quality of life and sexuality 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.

Dyadic coping and relationship functioning in couples coping with cancer: a systematic review.

OBJECTIVES: Cancer not only affects the patient but also the partner. In fact, couples may react as a unit rather than as individuals while coping with cancer (i.e., dyadic coping). We assessed (1) the relationship between dyadic coping and relationship functioning in couples coping with cancer and (2) whether intervention studies aimed at improving dyadic coping were able to enhance the relationship functioning of these couples. Recommendations for future studies are provided. METHOD: A systematic search was conducted to identify all eligible papers between January 1990 and September 2012. The databases PubMed, PsycINFO, the Cochrane Library, and EMBASE were screened. RESULTS: Most studies (n = 33) used an appropriate study design, adequate measurements, adequate analytical techniques, and a sufficient number of included participants to answer addressed research questions. However, the definition and assessment of dyadic coping strategies differed, which hampered comparison. Coping styles characterized by open and constructive (cancer-related) communication, supportive behaviours, positive dyadic coping, and joint problem solving were related to higher relationship functioning, whereas dysfunctional communication patterns (e.g., protective buffering, demand-withdraw communication), unsupportive behaviours, and negative dyadic coping were related to lower relationship functioning. The results of the intervention studies were inconsistent: while some studies reported a beneficial effect on relationship functioning, other studies report no such effect, or only found a positive effect in couples with fewer personal relationship resources. CONCLUSIONS: This review showed that adequate dyadic coping may improve relationship functioning, while dysfunctional dyadic coping may impede relationship functioning. In order to increase the comparability of the reported findings, a more uniformly conceptualized perspective on dyadic coping is needed. A better understanding of the dyadic challenges couples coping with cancer may face and more insight on how to expand the dyadic coping of these coupes might facilitate improvements in the quality of cancer care. Couple-based intervention studies may increase the couples' relationship functioning. However, future research is needed to examine more specifically which couples may benefit from such interventions. Statement of contribution What is already known on this subject? Dyadic coping may influence the distress experienced by both members of the couple and their relationship functioning. Several reviews already reported on the potential of couple-based interventions to improve the dyadic coping of couples coping with cancer and on the beneficial effects of this coping on the psychosocial adjustment and relationship functioning of patients and partners (e.g., Badr & Krebs, 2012; Martire, Shulz, Helgeson, Small, & Saghafi, 2010; Regan et al., 2012). However, even though we now know that couple-based intervention might be useful, no systematic review has been conducted that focuses specifically on the mechanisms of dyadic coping itself. What does this study add? This review showed the importance of stress communication, supportive behaviours, and positive dyadic coping for the maintenance or enhancement of relationship functioning in couples coping with cancer. In addition, the dyadic intervention studies send an important message that encourages to further examine the potential benefit of such interventions in future. However, more consensus in the conceptualization and assessment of the dyadic coping styles is needed in order to increase the comparability of the reported findings.

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.

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.

Dynamic article: Vaginal and perineal reconstruction using rectus abdominis myocutaneous flap in surgery for locally advanced rectum carcinoma and locally recurrent rectum carcinoma.

BACKGROUND: Surgery for locally advanced and recurrent rectal carcinoma sometimes requires partial resection of the perineum and/or vagina necessitating subsequent reconstruction. OBJECTIVE: The aim of this study was to describe the surgical and functional outcomes of reconstructing the vagina and/or the perineum by using the vertical rectus abdominis myocutaneous flap and to evaluate the health status of patients who received reconstruction. DESIGN: This is a retrospective cohort study. SETTINGS: This study was conducted at a tertiary referral hospital for locally advanced and recurrent rectal cancer. PATIENTS: Patients receiving multimodality treatment for primary or recurrent locally advanced rectal carcinomas were included. MAIN OUTCOME MEASURES: First, the surgical outcome was assessed. Second, 10 female patients who received vaginal reconstruction underwent a gynecological examination including biopsies. Finally, quality of life was assessed and compared with patients who underwent treatment for rectal carcinoma without a reconstruction. RESULTS: Fifty-one patients underwent reconstruction of the dorsal vagina and/or the perineum with the use of a vertical rectus abdominis myocutaneous flap. In 13 patients, the flap was used to close a perineal defect; in 26 patients, to close a vaginal defect; and in 12 patients, to close both. In 3 patients, partial necrosis of the flap occurred that was treated conservatively. In 4 patients, stenosis of the introitus occurred, as found in the gynecological examination. Biopsies confirmed epithelialization of the vaginal wall. All groups reported good functioning and low symptom burden. After vaginal reconstruction, women reported equal or higher scores on global health status, emotional functioning, and body image. LIMITATIONS: The lack of information on the health status of the patients before the start of treatment prohibits making causal inferences in health status over time. DISCUSSION: Reconstruction of the perineum and/or dorsal vagina was successful in all patients. Surgeons and gynecologists who use the vertical rectus abdominis myocutaneous flap should be aware of stenosis of the vaginal introitus. Gynecological consultation at an early stage should be standard.