Kathrin Milbury

A Systematic Review of Head and Neck Cancer Quality of Life Assessment Instruments

Although quality of life (QOL) is an important treatment outcome in head and neck cancer (HNC), cross-study comparisons have been hampered by the heterogeneity of measures used and the fact that reviews of HNC QOL instruments have not been comprehensive to date. We performed a systematic review of the published literature on HNC QOL instruments from 1990 to 2010, categorized, and reviewed the properties of the instruments using international guidelines as reference. Of the 2766 articles retrieved, 710 met the inclusion criteria and used 57 different head and neck-specific instruments to assess QOL. A review of the properties of these utilized measures and identification of areas in need of further research is presented. Given the volume and heterogeneity of QOL measures, there is no gold standard questionnaire. Therefore, when selecting instruments, researchers should consider not only psychometric properties but also research objectives, study design, and the pitfalls and benefits of combining different measures. Although great strides have been made in the assessment of QOL in HNC and researchers now have a plethora of quality instruments to choose from, more work is needed to improve the clinical utility of these measures in order to link QOL research to clinical practice. This review provides a platform for head and neck-specific instrument comparisons, with suggestions of important factors to consider in the systematic selection of QOL instruments, and is a first step towards translation of QOL assessment into the clinical scene.

Sexual problems, communication patterns, and depressive symptoms in couples coping with metastatic breast cancer

The treatment of breast cancer tends to result in physical side effects (e.g., vaginal dryness, stomatitis, and atrophy) that can cause sexual problems. Although studies of early‐stage breast cancer have demonstrated that sexual problems are associated with increased depressive symptoms for both patients and their partners, comparatively little is known about these associations in metastatic breast cancer (MBC) and how patients and partners cope together with sexual problems. We examined the links between sexual problems, depressive symptoms, and two types of spousal communication patterns (mutual constructive and demand–withdraw) in 191 couples in which the patient was initiating treatment for MBC.

Tibetan sound meditation for cognitive dysfunction: results of a randomized controlled pilot trial

Although chemotherapy‐induced cognitive impairment is common among breast cancer patients, evidence for effective interventions addressing cognitive deficits is limited. This randomized controlled trial examined the feasibility and preliminary efficacy of a Tibetan Sound Meditation (TSM) program to improve cognitive function and quality of life in breast cancer patients.

Randomized Controlled Trial of Expressive Writing for Patients With Renal Cell Carcinoma

PURPOSE This randomized controlled trial examined the quality-of-life benefits of an expressive writing (EW) intervention for patients with renal cell carcinoma (RCC) and identified a potential underlying mechanism of intervention efficacy. PATIENTS AND METHODS Patients (N = 277) with stage I to IV RCC were randomly assigned to write about their deepest thoughts and feelings regarding their cancer (EW) or about neutral topics (neutral writing [NW]) on four separate occasions. Patients completed the Center for Epidemiologic Studies Depression Scale (CES-D), MD Anderson Symptom Inventory (MDASI), Brief Fatigue Inventory (BFI), Pittsburgh Sleep Quality Index (PSQI), Medical Outcomes Study Short Form-36 (SF-36), and Impact of Event Scale (IES) at baseline and 1, 4, and 10 months after the intervention. RESULTS The mean age of participants (28% stage IV; 41% female) was 58 years. Multilevel modeling analyses, using a Bonferroni-corrected α = .021 for six outcomes adjusted for the correlation among outcomes, revealed that, relative to the NW group, patients in the EW group reported significantly lower MDASI scores (P = .003) and higher physical component summary scores on the SF-36 (P = .019) at 10 months after the intervention. Mediation analyses revealed that significant group differences for MDASI scores at 10 months were mediated by lower IES scores at 1 month after the intervention in the EW group (P = .042). No significant group differences were observed in the BFI, CES-D, PSQI, and mental component summary of the SF-36. CONCLUSION EW may reduce cancer-related symptoms and improve physical functioning in patients with RCC. Evidence suggests that this effect may occur through short-term improvements in cognitive processing.

Associations between depression, pain behaviors, and partner responses to pain in metastatic breast cancer.

Summary Greater patient pain was associated with increased depression. This in turn was associated with more patient pain behaviors and more distracting and punishing partner responses. ABSTRACT Women with metastatic breast cancer (MBC) rely on their partners for emotional and practical support. They also experience significant pain and depression, which can trigger maladaptive pain behaviors (eg, distorted ambulation). The biopsychosocial model of pain posits that partner solicitous responses can reinforce pain behaviors, whereas punishing or distracting responses can minimize their occurrence. This study explored how psychosocial variables (ie, depression and partner responses) influence patient pain behaviors and partner responses in 191 couples coping with MBC. Because few studies have examined the biopsychosocial model in cancer, it also examined associations between partner responses and patient pain behaviors. Multilevel models showed that depression partially mediated: (1) associations between patients’ and partners’ reports of patient pain (MPI) and their ratings of patient pain behaviors (PBCL), accounting for 41% to 71% of the variance; and (2) associations between both partners’ reports of patient pain and the partner’s distracting and punishing responses (MPI), accounting for 66% to 75% of the variance. Partner punishing responses moderated associations between patient pain severity and pain behaviors. Specifically, punishing responses were associated with more pain behaviors for patients with low levels of pain and fewer pain behaviors for patients with higher levels of pain (effect size r = .18). These findings provide partial support for the biopsychosocial model of pain but also clarify and extend it in the cancer context. Future pain management programs in MBC may benefit from addressing both partners’ depression levels and teaching partners to engage in fewer punishing responses when the patient is experiencing low levels of pain.

Couple-based Tibetan yoga program for lung cancer patients and their caregivers

The cancer diagnosis and treatment does not only reduce patients’ but also family caregivers’ quality of life (QOL) (1). Caregivers may experience clinical levels of depression, sleep disturbances and fatigue, (2) which may negatively impact their ability to provide quality care and support (3) and may exacerbate patient distress (4). As lung cancer is associated with more debilitating sequelae than any other type of cancer (5) resulting in a high need for care and support, caregivers of lung cancer patients may be particularly vulnerable to poor QOL (6). Although urgently needed, supportive care interventions that manage symptoms and QOL in both lung cancer patients and caregivers are generally lacking. Mind-body interventions such as yoga may improve various aspects of QOL (7); yet, previous investigations have exclude lung cancer patients as well as caregivers. Thus, we pilot-tested a couple-based Tibetan Yoga (TYC) program in lung cancer. Because the practice involves gentle, simple movements performed in a seated position, controlled breathing exercises, and meditation techniques fostering connectedness between patient and caregiver, we expected this type of yoga practice to be well suited for the needs of this vulnerable population. We examined the feasibility and preliminary efficacy regarding QOL outcomes of this dyadic supportive care approach. We incorporated the intervention into patients’ 6-week radiation treatment plans, as the program may be especially useful at this time to buffer treatment side effects and psychological distress that ensues.

Vivekananda Yoga Program for Patients with Advanced Lung Cancer and Their Family Caregivers

Background. The primary purpose of this study was to establish the feasibility of a couple-based Vivekananda Yoga (VKC) intervention in lung cancer patients and caregivers. Secondly, we examined preliminary efficacy regarding quality of life (QOL) outcomes. Method. In this single-arm feasibility trial, patients with lung cancer undergoing radiotherapy and their caregivers participated in a 15-session VKC program that focused on the interconnectedness of the dyad. We assessed pre-and post-intervention levels of fatigue, sleep disturbances, psychological distress, overall QOL, spirituality, and relational closeness. We tracked feasibility data, and participants completed program evaluations. Results. We approached 28 eligible dyads of which 15 (53%) consented and 9 (60%) completed the intervention. Patients (mean age = 73 years, 63% female, all stage III) and caregivers (mean age = 62 years, 38% female, 63% spouses) completed a mean of 10 sessions and 95.5% of them rated the program as very useful. Paired t tests revealed a significant increase in patients’ mental health (d = 0.84; P = .04) and a significant decrease in caregivers’ sleep disturbances (d = 1.44; P = .02). Although not statistically significant, for patients, effect sizes for change scores were medium for benefit finding and small for distress (d = 0.65 and 0.37, respectively). For caregivers, medium effects were found for improvement in physical functioning (d = 0.50). Conclusion. This novel supportive care program appears to be safe, feasible, acceptable, and subjectively useful for lung cancer patients and their caregivers and lends support for further study.

Couples’ Psychosocial Adaptation to Combat Wounds and Injuries

Almost half of all service members are married at the time of their deployment, and spouses play a key role in their rehabilitation after being wounded in combat. This chapter reviews the literature on couples’ psychosocial adaptation to combat wounds and injuries and is divided into three parts. First, we review studies on the impact of physical and psychological wounds on service members’ spousal relationships. Next, given the relative paucity of research in this area, we review the major theoretical frameworks that have guided an understanding of how spousal relationships promote adaptation to health-related stress in the civilian population and discuss how these frameworks can be used to help military couples cope with the unique challenges and implications of combat wounds and injuries. Finally, we discuss some of the challenges of doing research in this area and propose directions for future research.

An observational study of social control, mood, and self-efficacy in couples during treatment for head and neck cancer

Objective: Head and neck cancer (HNC) patients experience debilitating side effects, including abnormally reduced salivation and difficulty swallowing. Intensive self-care protocols are prescribed to control side effects and minimise discomfort, but non-adherence rates are high. Although spouses are in a prime position to encourage adherence, studies have yet to examine how spouse social control (i.e. attempts to influence patient behaviour to support adherence) affects HNC patient mood and self-efficacy for engaging in these self-care routines. Methods: One-hundred twenty-five HNC couples, where the patient (86% male) was undergoing radiotherapy, were recorded in the laboratory as they discussed a cancer-related issue that the patient identified as being a topic of concern. Results: Sixty-eight couples discussed side effects and spouses engaged in social control in 61 of these discussions. Although oral complications and pain were frequently identified by patients as being topics of concern, dental/oral care and pain management were some of the least likely self-care behaviours to be targeted by spouses, who focused primarily on encouraging patients to maintain their weight and hydration. Although spouses engaged in an almost equal number of positive and negative control attempts, only positive control was significantly (p < .05) associated with patient positive mood and self-efficacy. Conclusion: HNC couples may benefit from programmes that emphasise the regular practise of self-care routines to control oral side effects, pain and nutrition/hydration problems. Likewise, programmes that encourage spouses to maximise their use of positive social control may also boost patients’ mood during treatment and empower them to engage in recommended self-care behaviours.

Mind-Body Practices in Cancer Care

Being diagnosed with a life-threatening disease such as cancer and undergoing treatment can cause unwanted distress and interferes with quality of life. Uncontrolled stress can have a negative effect on a number of biological systems and processes leading to negative health outcomes. While some distress is normal, it is not benign and must be addressed, as failure to do so may compromise health and QOL outcomes. We present the evidence for the role of stress in cancer biology and mechanisms demonstrating how distress is associated with worse clinical outcomes. The National Comprehensive Cancer Network states that all patients be screened with the single-item distress thermometer and to also indicate the source of distress and to get appropriate referral. In addition to the many conventional approaches for managing distress from the fields of psychology and psychiatry, many patients are seeking strategies to manage their distress that are outside conventional medicine such as mind-body techniques. Mind-body techniques such as meditation, yoga, tai chi, and qigong have been found to lower distress and lead to improvements in different aspects of quality of life. It is essential that the standard of care in oncology include distress screening and the delivery of different techniques to help patients manage the psychosocial challenges of diagnosis and treatment of cancer.