Effectiveness Not Established

Structured Assessment

for Caregiver Strain and Burden

Structured assessment involves the incorporation of standardized assessment tools into usual care practices in order to provide staff with quantitative data on patient outcomes. The effects of this approach on patient and caregiver outcomes has been examined in the topics of depression and caregiver strain and burden

Research Evidence Summaries

McMillan, S.C., Small, B.J., & Haley, W.E. (2011). Improving hospice outcomes through systematic assessment: A clinical trial. Cancer Nursing, 34, 89–97.

Study Purpose

To determine if providing, to hospice patients and caregivers, systematic feedback from standardized assessment tools improves the quality of hospice care

Intervention Characteristics/Basic Study Process

Hospice teams were formed, each with a similar composition. Patients were randomly assigned to receive standard care (control) or standard care plus systematic assessment. Patient-caregiver dyads were identified and screened, within 24–72 hours of admission, with the Short Portable Mental Status Questionnaire. Research assistants (RAs, an RN and a social worker) collected baseline data from both the patient and caregiver, respectively, and then collected data one and two weeks later, using identified tools. Verbal and written reports were given at two interdisciplinary team conferences after each data collection. RAs performed a chart audit for both groups during the study. The control group completed the same standardized assessments, but no reports were made to the interdisciplinary team.

Sample Characteristics

  • The original sample was composed of 709 participants: 350 dyads completed all three measurements, and 366 left the study at some point over the course of follow-up.
  • Mean patient age was 74.05 years; mean caregiver age was 71.83 years.
  • Mean age of all caregivers was 65.37 years: in the control group, mean caregiver age was 65.49 years; in the experimental group, mean caregiver age was 65.24 years.
  • Mean age of all patients was 72.66 years: in the control group, mean patient age was 72.67 years; in the experimental group, mean patient age was 72.65 years.
  • The caregiver sample was 26.4% male and 73.6% female. The patient sample was 56.3% male and 43.7% female.
  • Patients had a cancer diagnosis and were receiving hospice care.
  • Caregivers had to be older than age 18, able to read and understand English, and able to pass the mental status screening.
  • Mean years of education was 13.21 years for caregivers and 12.14 years for patients. 
  • Patients' mean Palliative Performance Scale score was 57.06; patients' mean Short Portable Mental Status Questionnaire score was 9.23.

Setting

  • Multisite
  • Home
  • Two large, private not-for-profit hospices in Florida, United States

Phase of Care and Clinical Applications

  • Phase of care: end-of-life care
  • Clinical applications: end-of-life and palliative care, late effects and survivorship

Study Design

Randomized controlled trial 

Measurement Instruments/Methods

  • Palliative Performance Scale (PPS), to assess the physical condition and functional status of people receiving palliative care. The PPS includes three broad areas: mobility, intake, and level of consciousness in five categories. The scale, 0%–100%, is divided into 10% increments, with 0 meaning dead and 100 meaning normal. Validity and reliability were assessed.    
  • Memorial Symptom Assessment Scale (MSAS), revised, to assess occurrence, intensity, and distress from symptoms. A total of 25 items are rated 0–4 for severity and distress, resulting in subscale scores for intensity and distress that range 0–100. Validity and reliability were assessed.
  • Hospice Quality of Life Index–14 (HQLI-14). HQLI-14 is a shortened version of the validated HQLI. The HQLI-14 includes three aspects of overall quality of life (QOL): psycho-physiological well-being, functional well-being, and social-spiritual well-being. Fourteen items are scored 0–10, with 10 being the most favorable response. Item scores are added to obtain a total scale score ranging from 0 (worst QOL) to 140 (best QOL).
  • Center for Epidemiologic Study Depression Scale (CESD), short form. The short form of the CESD is a 10-item true-false instrument validated for use in clinical settings. Items are either present or absent. Validity and reliability are strong.
  • Spiritual Needs Inventory (SNI). The SNI assesses the extent to which individuals have spiritual needs and indicates which needs remain unmet. The SNI is a 17-item questionnaire with two main parts: The first rates items in response to a stem 1 (never) to 5 (always). Scores may range from 17 to 85, with a higher score representing a greater spiritual need. Individuals also choose yes or no to incide whether the need was met. Validity and reliability were assessed.
  • Short Portable Mental Status Questionnaire (SPMSQ). The SPMSQ presents 10 items to measure cognitive impairment. Eight or more correct answers qualified patients and caregivers to remain in the study. Validity has been assessed.

Results

The control and intervention groups were comparable in regard to every variable except patients' years of education. Attrition was greater than 51%. In dyads that completed the study, patients were older and had higher functional status scores at baseline. No other comparisons were statistically significant. Results showed improved patient depression (p < 0.001) as a result of the intervention and improvement in both groups in patients’ QOL (p < 0.001). No other patient outcomes (symptom distress, spiritual needs) or caregiver outcomes (depression, support and spiritual needs) were statistically significant.

Conclusions

The addition of the systematic assessment of depression to usual care probably had a greater effect because it is not a symptom on which hospice staff normally focus. Improving depression is an important way of improving overall QOL of patients and their families during hospice treatment. The lack of improvement in caregiver variables in either group over time may suggest the need for greater attention to this symptom.

Limitations

  • Dyads might not have used the information provided.
  • The study had a high level of attrition (greater than 51%).
  • Only patients who remained functional throughout the whole course of study were selected.
  • The information-only intervention may have been insufficient to lead to staff change.
  • The control group may not have been valid in the sense that high-quality usual care may have been similar to the intervention: The number of visits did not change significantly in the intervention group.
  • A study may have included a confounding effect: Hospice workers may have provided care of such good quality that results were affected by more than the intervention itself.

Nursing Implications

Hospice is an effective service, and efforts to improve hospice care should be a priority. Caregivers as well as patients should be a focus of hospice care. The study supports the systematic assessment of depression in hospice patients. The study also supports the need for greater attention, via research and systematic assessment, to caregivers in the hospice setting.

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