Campbell FA, Tramer NR, Carroll D, Reynolds DJM, Moore RA, McQuay HJ. BMJ 2001;323:1-6

Prepared by: : Dr Antonio Viganò

Received during: Journal rounds on TPCU on May 17th, 2001

Abstract:

Quality of life (QoL) assessment is crucial for the evaluation of palliative care outcomes. In this paper, our methodological approach was based on the creation of summary measures. Fifty-eight Palliative Care Units (PCUs) in Italy participated in the study. Each PCU randomly selected patients to be 'evaluated' among the consecutively 'registered' patients. At baseline (first visit) and each week the patient was asked to fill in a QoL questionnaire, the Therapy Impact Questionnaire (TIQ). Short-survivors (<7 days) were not included in the QoL study. The random sample of patients (n = 601) was highly representative of the general patient population cared for by the PCUs in Italy. The median survival was 37.9 days. We collected 3546 TIQ, 71.4 % completed by the patients. A Summary Measure Outcome score was calculated for 409 patients (81% of the patients included in the QoL study). The results of this national study showed that cooperative clinical research in palliative care is possible and QoL measures can be used to assess the outcome.

Comments:

Strengths/uniqueness:
This paper provides some interesting directions for future "epidemiologically" sound research, particularly the use of sampling procedures to obtain a representative sample and keep the workload to a minimum for the health professionals participating in a study. Flow-charts should become a standard for palliative care research. Outcomes were analyzed separately in sub-populations with different median survivals. Finally, reasonable efforts were made to overcome problems related to missing data and proxy versus self-reported data. It was quite interesting to see that the results obtained from proxy plus self-completed QoL assessments were comparable to those obtained using self-completed QoL assessments only. The participation of 58 different centers and the accrual of 505 patients over a period of 6 months are also remarkable.

Weaknesses:
The QoL questionnaire appears somewhat difficult to understand in its scales, sub-scales, summary scales and scores. Particularly, it is unclear how the "intermediate" score differs from the "last" score. There is a sense of overwhelming statistical work.
There is no convincing evidence the TIQ could be used in other countries.

Relevance to Palliative Care:
This study clearly points out that up to 2/3 of terminally ill cancer patients may not be able to complete a self-reported QoL questionnaire. Further studies looking at the feasibility and appropriateness of proxy assessments are needed to better understand the "quantity and quality" of suffering in this patients population.

Living with cancer: Good days and bad days - What produces them? Can the McGill Quality of Life Questionnaire distinguish between them?
S. Robin Cohen, Balfour M. Mount. Cancer 2000;89:1854-65.

Presented by: Dr Antonio Viganò
Forum: Journal Club, TPCU

Abstract:

Background: To determine the impact of care on quality of life (QOL), or to detect a change in QOL over time, measures of QOL must remain stable when QOL is stable (test-retest reliability) and change when QOL changes (responsiveness). This study addresses these issues for the McGill Quality of Life Questionnaire (MQOL). Unlike other studies that use disease status to indicate whether QOL has remained stable or changed, in this study the patient determines QOL stability or change. The authors also sought to clarify the determinants of good and bad days for oncology patients.
Methods: Patients attending an oncology outpatient clinic or who were being treated by a palliative care service were asked to complete MQOL 4 times: on days they judged to be good, average, andbad and 2 days after the first completion. They also were asked to directly rate the change in their QOL during the intervals between MQOL completion and to report the most important determinants of their good and bad days.
Results:The test-retest reliability of MQOL as measured by an intraclass correlation coefficient ranged from 0.69 to 0.78. All MQOL scores were significantly different on good, average, and bad days, except for the support subscale, in both clinical settings. Five domains were determinants of QOL: physical symptoms, physical functioning, psychologic well-being, existential well-being, and relationships.
Conclusion: MQOL's reliability and responsiveness suggest it can be used to determine changes in the QOL of groups. The results allow interpretation of changes in MQOL scores with respect to meaning of the change to oncology patients. This in turn is helpful to determine the sample size required in future studies. Some of the domains important to the QOL of oncology patients are not included in widely used measures of QOL.

Comments:

Strengths/uniqueness: Excellent paper intended to further determine test-retest reliability and responsiveness of the McGill Quality of life (QoL) questionnaire. The latter represents a good example of "preference-based" QoL instrument specifically developed for terminally ill cancer patients. Through a rigorous methodology the authors demonstrate that this type of assessment is suitable for measuring both QoL and its change over time for this population group. Furthermore they provide extremely useful "parameters" to calculate sample sizes in future studies that may look at the impact of different intervention on QoL.

Weaknesses: Relatively small sample size and convenience sampling as typical of this kind of studies considering terminally ill cancer patients. A comparison of certain characteristics among accrued and not accrued patients in the two settings would have been helpful in determining whether this sample was at least representative of these two patients groups.

Relevance to Palliative Care: Although the MQOL still requires some refinements (i.e. better trade-off between comprehensiveness of its content and time for completion), it represents a subjective and feasible approach to assess QoL in terminal cancer patients. This should promote the routine assessment/consideration of some QoL components (i.e. relationship, existential) that are usually confined to research rather than clinical practice in Palliative Care.

I was sick and you came to visit me: time spent at the bedside of seriously ill patients with poor prognoses.

Sulmasy DP, Rahn M. Am J Med 2001;111:385-389

Prepared by: Dr. Sharon Watanabe

Received during: Journal Club on the Tertiary Palliative Care Unit

Abstract:

Purpose: To learn how much time hospital staff and families spend at the bedsides of seriously ill patients with poor prognoses. Subjects and Methods: An observational study was made of 58 inpatients with cancer, acquired immunodeficiency syndrome, heart failure, obstructive lung disease, or advanced dementia, along with their families and the physicians and nurses working on the medical floors of a university hospital, using direct videotape surveillance of patients' doorways. Results: The mean (± SD) total visitor-minutes spent in the rooms of these patients was 321±297 minutes per day. On average, patients spent 18 hours 39 minutes per day alone. Mean visit durations were 3±3 minutes for attending physicians (including consultants), 3±2 minutes for house officers, 2±1 minutes for nurses, and 24±51 minutes for family. The total person-visits per patient per day were 3±3 for attending physicians, 9±8 for house officers, 45±23 for nurses, and 13±21 for family. Patient sex and age were not significantly associated with total visitor-minutes. In a repeated-measures analysis of variance model, nonwhite patients received fewer total visitor-minutes than did white patients, and patients with dementia received fewer total visitor-minutes than did patients with other diagnoses especially those with malignancy. Do-not-resuscitate orders were associated with slightly more total visitor-minutes. Conclusions: These seriously ill patients with poor prognoses spent most of their time in the hospital alone. Staff visits were frequent but brief. These data do not confirm anecdotal reports that staff members spend less time at the bedsides of patients with do-not-resuscitate orders. Patients with advanced dementia and minority patients appear to have less bedside contact. Further study is required to confirm these findings and to understand optimal visit time for medical inpatients with poor prognoses.

Comments:

Strengths/uniqueness:
This study represents a novel approach to investigating interactions of staff and families with seriously ill patients with poor prognoses. The use of direct observation by videotape was a methodological strength.

Weaknesses:
A large number of patients were excluded and the sample size was small, limiting generalizability of findings. Observations were made over a single 24-hour period, which may not have been necessarily representative of interactions over a longer period of time. Other disciplines that may have visited patients (e.g. volunteers, pastoral care workers) were not mentioned. Qualitative aspects of interactions were not examined in this study.

Relevance to Palliative Care:
This study suggests that palliative patients admitted to acute care hospitals spend a lot of time alone. How this affects patients' wellbeing is unclear. Patients should be assessed individually and mechanisms for support identified when needed. Patients who are cognitively impaired or from minority groups may be particularly vulnerable. The reasons underlying the brevity of physician visits, and the impact on quality of physician-patient relationships and patient outcomes, deserve further exploration.

Cancer patients' reported experiences of suffering
Kuuppelomaki M, Lauri S. Cancer Nursing 1998; 21(5): 364-9.

Presented by: Mohammad Z. Al-Shahri, MD
Received during: Journal Club, Tertiary Palliative Care Unit

Abstract:

This study describes the nature and content of experiences of suffering by patients with incurable cancer. The main body of data was collected in interviews. A structured questionnaire was administered for additional information. Three different dimensions were identified in patient experiences of suffering: physical psychologic and social. Suffering has a physical foundation, which was divided into two categories: that caused by the illness itself and that caused by treatment of the illness. The primary sources of physical suffering were fatigue, pain and the side effects of chemotherapy. The causes of psychologic suffering lie in the physiologic changes associated with the disease and in the imminence of death. Psychologic suffering was most typically manifested in depression, which most of the patients suffered during the initial stages of the disease, when the disease metastasized, and when they were in a particularly poor condition. General deterioration and fear of infection very much restrict the social life of cancer patients, causing them to withdraw into their home or the hospital.

Comments:

Strengths:
1. Trying to address the experience of suffering (and particularly its meaning to the patients) rather than studying one or a group of symptoms.
2. Validity and reliability of the questionnaire were reported.

Weaknesses:
1. Relatively small sample.
2. The adopted definition of suffering does not typically fit for cancer patients with moderate to severe symptoms.

Relevance to palliative care:
1. It appears that total suffering of cancer patients is directly proportional to the intensity of their physical symptoms.
2. It could be helpful for health professionals to be aware of the extent and meaning of suffering experienced by their patients. This might enable them to better understand and acknowledge their patients' experience of suffering.