Health Outcomes and Quality of Life

Unmet supportive care needs in colorectal cancer: differences by age

Mikaela Jorgensen, Jane Young, James Harrison, Michael Solomon

This study aimed to explore how unmet needs differ by age over the three months following colorectal cancer surgery. Participants from control groups of pilot phases of an ongoing randomised trial (n=57) completed the Supportive Care Needs Survey (SCNS) at one and three months after hospital discharge. Multiple regression analysis was used to investigate whether age was an independent predictor of unmet need in each of the SCNS domains (psychological, health system/information, physical/daily living, patient care/support, sexuality).

Unmet needs of all patients decreased over time. Older patients had significantly lower levels of unmet need in all SCNS domains except patient care/support at both time points, after adjusting for other factors (e.g. sex, comorbidity, adjuvant therapy use). However, 48% of older patients had unmet needs at one month, and 52% had unmet needs at three months. These results suggest that age-specific intervention to decrease unmet needs may be beneficial, and that patients’ needs should be monitored throughout their cancer journey.

Published: Supportive Care in Cancer 2011; doi: 10.1007/s00520-011-1214-9

Randomised control trial of biofeedback guided anal sphincter exercises in the treatment of faecal incontinence

Michael Solomon, Christopher Byrne₁, Jane Young, Jenny Rex₂, Janet candido₂, Christine Merlino₃, Emily Chew₃

1. Department of Colorectal Surgery, Royal Prince Alfred Hospital
2. Department of Anorectal Facility, Royal Prince Alfred Hospital; Biofeedback and Continence Centre (BAC)
3. Department of Colorectal Research, Royal Prince Alfred Hospital

Faecal incontinence becomes increasingly prevalent as patients age and previous mild sphincter dysfunction becomes unmasked. Incontinence is a more common problem in women with the most common predisposing factor being childbirth which damages the pelvic floor, anal sphincter mechanism and/or pudendal nerves. There are numerous surgical treatments for faecal incontinence, but the indications and results of these operations mean that relatively few patients are suitable for surgical intervention therefore the use of biofeedback benefits the quality of life of these patients.
Biofeedback involves the use of anal manometry and trans-anal ultrasound. This allows the participant to watch the contractions of their anal sphincter in ‘real time’ in order to develop better control of their bowel function. The purpose of this trial is to determine the optimal type and number of biofeedback sessions needed to obtain good results.
This is a prospective randomised controlled trial. Patients will be stratified according to place of residence (within Sydney/outside Sydney) and then randomised treatment groups. The aims are to determine whether a single biofeedback treatment session with monthly telephone follow-up is as effective as standard monthly clinic-based biofeedback treatment for people with faecal incontinence and then to determine whether a single biofeedback treatment session with monthly telephone follow-up is more effective than a single biofeedback treatment session alone.

The primary outcome measures are patient assessment of view of the effectiveness of treatment rated as “worse”, “same”, “improved” or “cured” and change in quality of life index as measured by using the Direct Questioning of Objectives technique. The Secondary outcome measures are resting, cough, maximal and fatigue of squeeze anal canal manometric pressures in millimetres of mercury and isotonic fatigue time & isometric fatigue contraction number – as assessed by ultrasound.

This study is being run in conjunction with the Royal Prince Alfred Hospital Biofeedback and Continence (BAC) Centre.

Status: Recruitment and follow-up underway

Quality of life in perianal crohn's disease: what do patients consider important?

Srihari Mahadev₁, Jane Young, Warrick Selby₂, Michael Solomon

1. Central Clinical School, Royal Prince Alfred Hospital
2. Department of Gastroenterology, Royal Prince Alfred Hospital

The study is a mailed survey of patients with perianal Crohn's disease. The aim of the study was to identify the quality of life issues associated with perianal disease that patients consider most important and most adverse. Participants were asked to rate the importance of various symptoms, and were also surveyed regarding depression and overall quality of life. In addition, biographic data and clinical data were collected from medical records. Of the eligible patients, 69 (53%) responded to the survey. Physical symptoms of pain and discomfort were rated as most important. A significant minority (41%) indicated they would be willing to trade part their life expectancy to be cured of perianal symptoms. Depressive symptoms were reported by 73% of patients, and an alarming 13% reported feeling suicidal due to their perianal disease. Perianal drains were associated with high importance scores for a majority of quality of life factors.

Published: Diseases of the Colon & Rectum 2011:54:5:579-585

Quality of life of people with head and neck cancer: do ethnic differences exist?

Aisha Harun₁, James Harrison, Justine Oates₂, Jane Young, Jonathan Clark₂,

1. The Johns Hopkins University School of Medicine
2. Sydney Head and Nect Cancer Institute, Sydney Cancer Centre, Royal Prince Alfred Hospital

Few studies have investigated the effect of ethnicity as a predictor of health-related quality of life for people with head and neck cancer. An understanding of any potential ethnic differences in quality of life could assist in the identification of areas where health care delivery can be improved. The aim of this study was to investigate if ethnicity was a predictor of poor quality of life at diagnosis and if there were any differences in quality of life of patients diagnosed with head and neck cancer in relation to their ethnic background over the twelve months following diagnosis.

A prospective, observational cohort study was conducted at a tertiary care cancer centre in Sydney, Australia between 1 January 2001 and 31 December 2009. Quality of life data was collected using the EORTC QLQ-C30 and the QLQ-H&N35 module. This data was collected before treatment (baseline) and at 3, 6, and 12 months after treatment.

Status: Data analysis and manuscript preparation

Improving psychosocial outcomes for cancer carers: An interview study

Joanne Shaw, Jane. Young, James. Harrison, Phyllis. Butow ,Charbel Sandroussi₁, David. Martin₂, Patricia Davidson₃, Robyn Secomb, Michael. Solomon,

1. Department Upper Gastrointestinal Surgery, Royal Prince Alfred Hospital
2. Department of Upper Gastrointestinal Surgery, Concord Repatriation General Hospital
3. Centre for Cardiovascular and Chronic Care, Curtin University of Technology

The purpose of the Carer Interview study was to explore and articulate the issues and experiences of family caregivers of people who have undergone surgery for newly diagnosed gastrointestinal cancer or stage Duke’s D colorectal cancer. Specifically, the study investigated family members’ perceptions of their role in the ongoing care of a patient with cancer. The study also identified the supportive care needs relevant to family caregivers as well as potential barriers to acceptance of supportive care. The study involved two semi-structured interviews, one within three weeks of the date of surgery and a second interview three months later.

Status: Study completed. Manuscript in preparation

Improved psychosocial outcomes for cancer carers: a randomised controlled trial

Jane Young, Phyllis Butow, Patricia Davidson₁, James Harrison, David Martin₂, David Story₃, Michael Solomon, Joanne Shaw

1. Centre for Cardiovascular and Chronic Care, Curtin University of Technology
2. Department of Upper Gastrointestinal Surgery, Concord Repatriation General Hospital
3. Department Upper Gastrointestinal Surgery, Royal Prince Alfred Hospital

This is a randomised controlled trial to assess whether a structured telephone delivered intervention for cancer carers will reduce psychological distress and improve their quality of life in the first three months following diagnosis. It is also designed to investigate whether this intervention directed at carers can also improve psychosocial outcomes (quality of life, psychological distress) for patients themselves and reduce the number of unplanned contacts with health services such as hospital admissions and emergency department visits. Specifically the primary aim of this research is to ascertain the effectiveness of a structured telephone intervention for the principal family or friend providing care and support to post-operative patients with poor prognosis gastrointestinal cancer to improve carers’ quality of life in the first three months following the patients’ discharge from hospital.

Status: Recruitment in progress

Comparison of surgical flap repairs for complex anal fistula: analysis of long term outcomes

Min Hoe Chew₁, James Harrison, Verinder Sidhu₁, Shafqat Inam₁, Michael Solomon

1. Dept of Colorectal Surgery, RPAH

The surgical management of high anal fistulae remains a challenge. Randomised studies of varying techniques remain difficult due to the low prevalence of complex fistulae Varied surgical procedures have been described, the two most commonly performed involve a Mucosal advancement flaps (MAF) or anocutaneous flap (ACF) repair. No single technique has been shown to be suitable for all types of anal fistula and concerns regarding recurrence, adequate control of sepsis and a risk of post operative faecal incontinence remain for each procedure.

A previous study at SOuRCe has described our early experience of sixteen patients who underwent an ACF procedure and noted one recurrence, 70% improvement of continence scores as well as improvements in quality of life in 15 patients. Given these findings, this study will make a direct comparison between the MAF and ACF surgical techniques. A retrospective analysis will be performed using patients with high cryptoglandular complex anal fistulas who underwent these two procedures.

The objective of this study is to determine if the management of complex fistula using the ACF procedure may provide a superior outcome for patients.

Participants will be those in ongoing follow-up due to surgery for an anal fistula and identified from the records of a single surgeon. Participation is via informed consent and voluntary. Demographic and operative outcomes of the study sample will be described from participants’ medical records. Quality of life and functional outcome measures such as Perianal Disease Index (PDAI) and St Mark’s continence scores will determined via a telephone interview conducted by clinical interviewers.
The results of this study may provide guidance to selection of flap repair methods for patients undergoing future complex fistula surgery.

Status: Under Ethics review

Factors influencing donor and recipient decision making in adult-to-adult living donor liver transplantation: a survey using hypothetical scenarios.

Joshua Lansom₁, Michael Crawford₂, Michael Solomon.

1. Medical Student, University of Sydney
2. Surgical Director, Australian National Liver Transplant Unit

In Australia there is a shortage of deceased organs for those in need of liver transplantation. One solution to this shortage is adult-to-adult living donor liver transplantation (AALDLT). AALDLT has been available in Australia for several years now but has only been performed twice. It was thought that patient preferences and understanding might be part of the reason for the low take-up of AALDLT. There is no published research done on potential live liver donor decision making in Australia. This study uses hypothetical scenarios to ask people from the general population what factors would influence their decision to donate or not to donate if they had a loved one who required a liver transplant. This study also seeks to determine from whom someone would be willing to consider receiving a living donation from if they needed a liver transplant.

The results of this study will inform the clinicians which factors are more important than others in the decision to be a living donor. This will allow clinicians to engage with patients and their families on issues that have been shown to be of concern to other people.

Status: Data analysis & Manuscript in preparation

Preoperative body mass index, 30 day postoperative morbidity, length of stay and quality of life in patients undergoing pelvic exenteration surgery for recurrent and locally advanced rectal cancer.

Jessica Beaton₁, Sharon Carey₁, Michael Solomon, Jane Young.

1. Department of Nutrition & Dietetics, Royal Prince Alfred Hospital

The aim of this retrospective study is to determine if preoperative body mass index (BMI) is associated with 30 day morbidity and/or quality of life (QOL) in patients undergoing pelvic exenteration surgery for recurrent or locally advanced rectal cancer.

Of the 75 patients identified, 31 patients had preoperative weight and height data, and postoperative QOL information available to be analysed. Amongst these 31 patients, the mean BMI of patients was 24.3 (± 5.9) kg/m2, with no correlation between BMI and QOL. The average LOS was 21 (± 23) days and was significantly longer in patients who were underweight compared to those of normal weight (F=6.508, p=0.006) and overweight and obese (f=6.508, p=0.007).
Patients with two or more complications trended towards having a lower BMI (19.9 ± 2.6 kg/m2) compared with patients who had less than two complications (25.2 kg/m2 ± 6.0) (t=1.888, p 0.07), although this was not statistically significant.

This study suggests a lower BMI preoperatively is associated with a longer length of stay and a trend towards a greater number of postoperative complications following pelvic exenteration for rectal cancer.

Status: Manuscript under editorial review.