QualifyofLifeResearch,l, pp. 47-51
Assessing the symptoms, anxiety and practical needs of HIV/AIDS patients receiving palliative care E. Butters,* I. Higginson, R. George, A. Smits and M. McCarthy Department of Epidemiology and Public Health, University College London and Middlesex School of Medicine, 66-72 Gower Street, London, WC1 E 6EA, UK (E. Butters, I. Higginson and M. McCarthy); Community Care Team (Bloomsbury and Islington), National Temperance Hospital, Hampstead Road, London, NW1 2LT, UK (R. George); St. Mary’s Home Support Team, St. Mary’s Hospital, Praed Street, London, W2 lNY, UK (A. Smits).
We report the work of two community teams who care for people with AIDS/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 146 patients (66 St. Mary’s Home Support Team, 55 Bloomsbury Dommunlty Care Team) who were referred to and remained in the care of these teams until death. All patients were male, mean age 37.9 years, 116 were homosexual. Most referrals were from genito-urinary medicine clinics (46%) or AIDS wards (41%). There was a wide range of reasons for referral. At referral 62% were in hospital and 36% at home. Mean time in care was 31 weeks 5 days. Fffty-seven per cent died in hospital, 22% at home and 21% in a hospice. The Support Team Assessment Schedule (STAS), consisting of 17 items of care, was used by the teams to measure aspects of quality of life. Throughout care until death four STAS items: pain control, symptom control, patient anxiety and practical aid are reported in detail. Symptom control was a commonly severe problem at referral and although the teams had some success in improving this item it remained a serious problem throughout care. Patient anxiety, also a commonly severe problem at referral, improved significantly throughout care. Pain control was less commonly severe at referral and improved significantly throughout care. Practical aid, in contrast, was rarely a severe problem st any stage of care. Key words: Anxiety, audit, community care, evaluation, HIV/AIDS, pain, palliative care, quality of life, symptoms.
l
0
To whom correspondence should be addressed. 1992 Rapid
Communications
of Oxford
Ltd
Introduction Community support teams following palliative care and hospice models have been developed in Parkside and Bloomsbury Health Authorities, in Central London, to assist in the care of HIV/AIDS patients in the community and in hospital.‘*2 The two teams, the St. Mary’s Home Support Team (HST) and the Bloomsbury Community Care Team (BCCT), are multidisciplinary teams and have been described in detail elsewhere.lm3 Both teams support patients and their carers, and aim to increase their choices of place of care and death by offering symptom control; counselling for both patient and carer; 24 h on-call, bereavement follow-up; and both formal education and one-to-one advice on diagnosis, nursing and terminal care needs. They coordinate and support existing services king with hospital and outpatient clinics and work with these services offering shared care and do not take over care. This study is an extension of an evaluation of palliative support teams which cared for cancer patients at home. The study with cancer teams began in 1985 with the development of an assessment schedule, the ‘Support Team Assessment Schedule’ (STAS). The STAS has been used to assess patients and families cared for by six cancer support teams and has been validated for use as a measure of aspects affecting quality of life.4*5 It has a high level of inter-rater reliability. 5 We report the characteristics of patients referred, and changing severity of four STAS items, Quality
of Life Research
. Vol I.1992
47
E. Buffers et al. considering them at referral, by the second week of care and in the last week of life. These data will assist doctors and nurses who care for patients with AIDS/HIV related illness and those who plan services.
Methods Data were collected on consecutive patients referred. The results here include all patients who died in the care of the teams: HST 20 months follow up, BCCT 18 months. We developed standard clinical records including: demographic, social, diagnostic, survival and referral characteristics; place of care; length of time in care; discharge or death; place of death; bereavement follow-up and other professional involvement. Fortnightly assessments were recorded by the team members on all STAS items, IO patient and family items: pain control, symptom control, patient anxiety, family anxiety, patient insight, family insight, planning, spiritual, predictability, and communication between patient and family; and seven service items: practical aid, financial, wasted time, communication between professionals to patient and family, communication between professionals, professional anxiety and advising professionals6 Family items apply to patients’ nearest carers, who may be family members, but in many cases will be partners or friends. The STAS is problem orientated and items are rated O-4, (ranging 0 = no problems; to 4 = worst, severe, multiple problems). Definitions for each item and each point are documented. We report four STAS items in detail, pain control, symptom control, patient anxiety and practical aid; all important aspects of quality of life for people with HIV/AIDS which may be particular problems in home care.6 Definitions and ratings for these four items are shown in Appendix A. Results of the other STAS items have been reported in detail by Higginson in a report to the World Health Organization.6 Wilcoxon matched-pairs signed-ranks tests were used to test for differences between STAS ratings recorded in different weeks of care. p < 0.05 was taken as significant.
During 48
the study 140 patients (85 HST, 55 BCCT)
Quality
ofLife Research . Vol 1 .2992
were referred to the teams and remained care until death.
in their
Patient characteristics
All 140 patients were male, mean age 37.9 years (range 23-61 years), 116 were homosexual and 20 bisexual (four other). At referral, 118 had AIDS (including all 55 BCCT patients) and 19 were HIV positive only (three other). Most referrals were from genito-urinary medicine clinics, 67 (48%), or AIDS wards, 57 (41%) (16 other). At referral, patients had a wide range of medical and psychosocial needs; 50% had more than one reason for referral. The most common first reasons for referral were symptom control, 46 (33%) and patients support, 19 (14%). Place of care at referral was not recorded at the beginning of the study but introduced later, this was recorded for 97 of the patients: 60 (62%) were in hospital, 35 (36%) at home, and two (2%) in a hospice. Mean and median times in care, from referral to death, were 31 weeks 5 days (range 3 days to 108 weeks) and 18 weeks respectively. Mean time for HST was longer, 41 weeks 6 days, compared to BCCT 16 weeks 1 day. The teams often arranged for other professionals to be involved in patients’ care: at referral 76 (64%) patients had a general practitioner, but by the last week of care this had risen to 124 (89%). Seventy-eight (57%) patients died in hospital, 31 (22%) at home and 29 (21%) in a hospice (two missing). Bereavement follow-up was carried out for 201 relatives of 107 patients, mainly with a visit (49) or phone call (53) (five other) by the teams’ nurses (84) and doctors (16) (seven other).
STAS item ratings
Tables 1, 2, 3 and 4 show the percentage of patients with each rating, during care, for the four STAS items: pain control, symptom control, patient anxiety and practical aid. At referral, symptom control was the most severe problem, 36% of patients were rated 3 or 4. A few patients also had severe problems of anxiety or pain control, 33% and 15%, respectively, were rated 3 or 4. However, very few patients (6%) had severe ratings for practical aid. During care ratings for all items improved, the difference was significant by the second week of care for three items: symptom
HIV/ADS
patients
Table 1. STAS ratings for pain control: number and percentage of patients with each rating
Table4. STAS ratings for practical aid: number and percentage of patients with each rating
Week of care
Week of care
Ratings n (percentage) n
0
1
2
3
Referral* 124 83(51)27(22)15(12)11 (9) Second” 77 51 (88)20(28) 4 (5) 2(3) Last (death)* 128 84 (88) 31 (24) 10 (8) 2 (1)
4 S(8) O(0) 1 (1)
138 patients with >l week in care “129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.01 Wilwxon-referral vs. last week of care (death): p < 0.0001
l
Table 2. STAS ratings for symptom control: number and percentage of patients with each rating Week of care
Ratings n (percentage) n
0
1
2
3
4
Referral* 125 8 (4) 32 (28) 42 (34) 30 (24) 15 (12) Second*’ 77 12(18) 17(22)21(27) 17(22) lO(13) Last (death)* 127 31 (24) 31 (24) 24 (19) 28 (21) 15 (12) 138 patients with >l week in care l *129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.05 Wilcoxon-referral vs. last week of care (death): p < 0.01
l
Table3. STAS ratings for patient anxiety: number and percentage of patients with each rating Week of care
Ratings n (percentage) n
0
1
2
3
4
Referral* 123 9 (7) 43 (35) 31 (25) 24 (20) 18 (13) Second” 78 12(18)25(33)17(22)18(24) 4 (5) Last (death)* 117 55 (47) 28 (24) 19 (18) 10 (9) 5 (4) 138 patients with >l week in care l *129 patients with >2 weeks in care (52/129 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.05 Wilcoxon-referral vs. last week of care (death): p < 0.00005
l
control, patient anxiety and pain control. Symptom control remained a relatively severe problem, and at death 33% of patients still had severe ratings (3 or 4).
Discussion The characteristics of patients described here are similar to those of an earlier but smaller series.3
Ratings n (percentage) n
0
1
2
3
Referral* 122 74(81)27(22)14(11) O(0) 78 55(72) 12(18) 8 (8) 1 (1) Second** Last (death)’ 127 104(82) 18(12) 8 (5) O(0)
4 7(8) 2(3) 1 (1)
138 patients with >l week in care l *129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: not significant Wilcoxon-referral vs. last week of care (death): p -z 0.001
l
Most patients were referred to the teams for symptom control and support. The STAS items ratings reflect this: symptom control and patient anxiety were severe in over 33% of patients at referral. Although significant improvements occurred during care for the four items, control of symptoms proved difficult for the teams to achieve, and we are concerned that a large proportion of patients (33%) had ratings of 3 or 4, indicating many problems in the last week of care. We will be investigating further if particular symptoms have been difficult to control. Common symptoms included: weakness, diarrhoea, muscle wasting, memory loss, visual problems and dyspnoea. We need to look more closely at symptom control throughout care - some symptoms may take time to resolve, others may present close to death. Quality of life is a subjective and multidimensional construct,’ and we have only been able to consider some aspects here. Furthermore, STAS ratings are the teams’ perceptions of patients’ and carers’ problems and needs. In an earlier study, patients in the care of BCCT were interviewed to record their perceptions and satisfaction with the team and to compare their ratings of these items with BCCTs ratings. Carers were also interviewed. Agreement between matched patient, carer and BCCI assessments was reasonable; patients and BCCT ratings were significantly correlated (Spearman p = 0.66, p < 0.005). However, patients assessed pain as significantly more severe than did BCCT (p < 0.05, Wilcoxon Z - 2.45).’ In response to this BCCT intends to carry out a study of their patients, who will be asked to assess their pain at weekly intervals, using the same scales as the team. Teams found it useful to record the STAS assessment, as this reflected the quality of life of Quality of Life Research . Vol 1 ~1992 49
E. Butters et al. patients and they could use this information in their clinical practice. Aaronson has recommended that, “. . . research designs and data collection procedures should be selected that minimize patient, medical staff, and institutional burden”.’ In this study it was possible to incorporate the STAS into the clinical setting as a ‘normal part of care’ rather than making a separate assessment. Other professionals working with people with HIV/AIDS may also find the STAS a useful method for evaluating their work and patients.
Acknowledgements We would like to thank the members of the two teams, and closely associated colleagues, for their work and helpful comments. Angela Wade and Mark Davis. We thank ‘Help the Hospice’ and Sainsbury’s Monument Trust whose funding made this study possible.
Appendix A. Definitions and ratings for pain control Pain control: the effect of his or her symptoms the patient.
on
0 = None. 1 = Occasional or grumbling single pain. Patient has usual activity and is not bothered to be rid of symptom. 2 = Moderate distress, occasional bad days, pain limits some activity possible within extent of disease. 3 = Severe pain present often. Activities and concentration markedly affected by pain. 4 = Severe and continuous overwhelming Unable to think of other matters.
pain.
References 1. Smits A, Mansfield S, Singh S. Facilitating care of
patients with HIV infection by hospital and primary care teams. BMJ 1990; 300: 241-243. 2. Pye M, Kapila M, Buckley G, Cunningham D, Eds. Responding fo the AIDS Challenge. A comparativestudy of local AIDS progrummes in the United Kingdom. Health
Definitions and ratings for symptom control Symptom control (not including pain): the effect of his or her symptoms on the patient.0 = None.
Education Authority. Harlow, Longman, 1989. 3. Butters E, Higginson I, George R, et al. Two commun-
ity HIV/AIDS teams: referrals, patient characteristics and pattern of care. Health Trends 1991; 23(2): 59-62. 4. Higginson I, Wade A, McCarthy M. A comparison of four outcome measures of terminal care. In: Gilmore A, Gilmore S, eds. A Safer Death: Multidisciplinary Aspects of Terminal Cure. New York: Plenum, 1988: 205-211. 5. Higginson I, Wade A, McCarthy M. Effectiveness of two palliative support teams. J Public Health Med 1992; 1: (in press). 6. Higginson I. Evaluation of carefor HIV/AIDS Pafienfs by Two Community Teamsin London, UK. Report commissioned by the Regional Programme for AIDS, World Health Organisation, Copenhagen, 1990. 7. Aaronson N, Meyerowitz B, Bard M, et al. Quality of life research in oncology. Cancer 1991; 67: 834-839. 8. Butters E, Higginson I, George R, McCarthy M. Terminal care for people with HIV/AIDS: comparing the views of patients, carers and providers. VIIth
International Conference on AIDS, Florence, 1991. 9. Aaronson N. Methodologic issues in assessing quality of life in cancer patients. Cancer 1991; 67: 844-850. (Received 27 September 1992; accepted in revisedform 5
November 2992) !%
Quality
ofLife
Research
. Vol 1 . 1992
1 = Occasional or grumbling single or few symptom(s). Patient has usual activity and is not bothered to be rid of symptom(s). 2 = Moderate distress, occasional bad days, symptoms limits some activity possible within extent of disease. 3 = Severe symptom(s) present often. Activities and concentration markedly affected by symptom(s). 4 = Severe and continuous overwhelming symptom(s). Unable to think of other matters.
Definitions and ratings for patient anxiety Patient anxiety: the effect of his or her anxiety on the patient.
HIV/AIDS
path ts
Appendix con timed
Definitions and ratings for practical aids
0 = None.
Practical aids: further need for practical aids at home, reflecting the difficulty for patient and family without aids.
1 = Worry over changes. No physical or behavioural symptoms of anxiety. Concentration not affected. 2 = Waiting for changes or problems: on the edge. Occasional physical or behavioural symptoms of anxiety. 3 = Anxious often. Physical/behavioural symptoms. Concentration markedly affected. 4 = Completely and continuously preoccupied with anxiety and worries. Unable to think of other matters.
0 = None needed. 1 = One aid desirable, ging at present.
not urgent,
patient
mana-
2 = One aid needed urgently i.e., the next day, or a few aids needed soon, patient or family experiencing some difficulty. 3 = Aids needed badly, some improvisation ible. 4 = Patient incapacitated
Quality
without
poss-
basic aids.
of Lifi Research
. Vol 1 .I992
51
Assessing the symptoms, anxiety and practical needs of HIV/AIDS patients receiving palliative care E. Butters,* I. Higginson, R. George, A. Smits and M. McCarthy Department of Epidemiology and Public Health, University College London and Middlesex School of Medicine, 66-72 Gower Street, London, WC1 E 6EA, UK (E. Butters, I. Higginson and M. McCarthy); Community Care Team (Bloomsbury and Islington), National Temperance Hospital, Hampstead Road, London, NW1 2LT, UK (R. George); St. Mary’s Home Support Team, St. Mary’s Hospital, Praed Street, London, W2 lNY, UK (A. Smits).
We report the work of two community teams who care for people with AIDS/HIV related illness, the characteristics of patients referred, and the impact of the teams on four aspects of quality of life. Data was collected on 146 patients (66 St. Mary’s Home Support Team, 55 Bloomsbury Dommunlty Care Team) who were referred to and remained in the care of these teams until death. All patients were male, mean age 37.9 years, 116 were homosexual. Most referrals were from genito-urinary medicine clinics (46%) or AIDS wards (41%). There was a wide range of reasons for referral. At referral 62% were in hospital and 36% at home. Mean time in care was 31 weeks 5 days. Fffty-seven per cent died in hospital, 22% at home and 21% in a hospice. The Support Team Assessment Schedule (STAS), consisting of 17 items of care, was used by the teams to measure aspects of quality of life. Throughout care until death four STAS items: pain control, symptom control, patient anxiety and practical aid are reported in detail. Symptom control was a commonly severe problem at referral and although the teams had some success in improving this item it remained a serious problem throughout care. Patient anxiety, also a commonly severe problem at referral, improved significantly throughout care. Pain control was less commonly severe at referral and improved significantly throughout care. Practical aid, in contrast, was rarely a severe problem st any stage of care. Key words: Anxiety, audit, community care, evaluation, HIV/AIDS, pain, palliative care, quality of life, symptoms.
l
0
To whom correspondence should be addressed. 1992 Rapid
Communications
of Oxford
Ltd
Introduction Community support teams following palliative care and hospice models have been developed in Parkside and Bloomsbury Health Authorities, in Central London, to assist in the care of HIV/AIDS patients in the community and in hospital.‘*2 The two teams, the St. Mary’s Home Support Team (HST) and the Bloomsbury Community Care Team (BCCT), are multidisciplinary teams and have been described in detail elsewhere.lm3 Both teams support patients and their carers, and aim to increase their choices of place of care and death by offering symptom control; counselling for both patient and carer; 24 h on-call, bereavement follow-up; and both formal education and one-to-one advice on diagnosis, nursing and terminal care needs. They coordinate and support existing services king with hospital and outpatient clinics and work with these services offering shared care and do not take over care. This study is an extension of an evaluation of palliative support teams which cared for cancer patients at home. The study with cancer teams began in 1985 with the development of an assessment schedule, the ‘Support Team Assessment Schedule’ (STAS). The STAS has been used to assess patients and families cared for by six cancer support teams and has been validated for use as a measure of aspects affecting quality of life.4*5 It has a high level of inter-rater reliability. 5 We report the characteristics of patients referred, and changing severity of four STAS items, Quality
of Life Research
. Vol I.1992
47
E. Buffers et al. considering them at referral, by the second week of care and in the last week of life. These data will assist doctors and nurses who care for patients with AIDS/HIV related illness and those who plan services.
Methods Data were collected on consecutive patients referred. The results here include all patients who died in the care of the teams: HST 20 months follow up, BCCT 18 months. We developed standard clinical records including: demographic, social, diagnostic, survival and referral characteristics; place of care; length of time in care; discharge or death; place of death; bereavement follow-up and other professional involvement. Fortnightly assessments were recorded by the team members on all STAS items, IO patient and family items: pain control, symptom control, patient anxiety, family anxiety, patient insight, family insight, planning, spiritual, predictability, and communication between patient and family; and seven service items: practical aid, financial, wasted time, communication between professionals to patient and family, communication between professionals, professional anxiety and advising professionals6 Family items apply to patients’ nearest carers, who may be family members, but in many cases will be partners or friends. The STAS is problem orientated and items are rated O-4, (ranging 0 = no problems; to 4 = worst, severe, multiple problems). Definitions for each item and each point are documented. We report four STAS items in detail, pain control, symptom control, patient anxiety and practical aid; all important aspects of quality of life for people with HIV/AIDS which may be particular problems in home care.6 Definitions and ratings for these four items are shown in Appendix A. Results of the other STAS items have been reported in detail by Higginson in a report to the World Health Organization.6 Wilcoxon matched-pairs signed-ranks tests were used to test for differences between STAS ratings recorded in different weeks of care. p < 0.05 was taken as significant.
During 48
the study 140 patients (85 HST, 55 BCCT)
Quality
ofLife Research . Vol 1 .2992
were referred to the teams and remained care until death.
in their
Patient characteristics
All 140 patients were male, mean age 37.9 years (range 23-61 years), 116 were homosexual and 20 bisexual (four other). At referral, 118 had AIDS (including all 55 BCCT patients) and 19 were HIV positive only (three other). Most referrals were from genito-urinary medicine clinics, 67 (48%), or AIDS wards, 57 (41%) (16 other). At referral, patients had a wide range of medical and psychosocial needs; 50% had more than one reason for referral. The most common first reasons for referral were symptom control, 46 (33%) and patients support, 19 (14%). Place of care at referral was not recorded at the beginning of the study but introduced later, this was recorded for 97 of the patients: 60 (62%) were in hospital, 35 (36%) at home, and two (2%) in a hospice. Mean and median times in care, from referral to death, were 31 weeks 5 days (range 3 days to 108 weeks) and 18 weeks respectively. Mean time for HST was longer, 41 weeks 6 days, compared to BCCT 16 weeks 1 day. The teams often arranged for other professionals to be involved in patients’ care: at referral 76 (64%) patients had a general practitioner, but by the last week of care this had risen to 124 (89%). Seventy-eight (57%) patients died in hospital, 31 (22%) at home and 29 (21%) in a hospice (two missing). Bereavement follow-up was carried out for 201 relatives of 107 patients, mainly with a visit (49) or phone call (53) (five other) by the teams’ nurses (84) and doctors (16) (seven other).
STAS item ratings
Tables 1, 2, 3 and 4 show the percentage of patients with each rating, during care, for the four STAS items: pain control, symptom control, patient anxiety and practical aid. At referral, symptom control was the most severe problem, 36% of patients were rated 3 or 4. A few patients also had severe problems of anxiety or pain control, 33% and 15%, respectively, were rated 3 or 4. However, very few patients (6%) had severe ratings for practical aid. During care ratings for all items improved, the difference was significant by the second week of care for three items: symptom
HIV/ADS
patients
Table 1. STAS ratings for pain control: number and percentage of patients with each rating
Table4. STAS ratings for practical aid: number and percentage of patients with each rating
Week of care
Week of care
Ratings n (percentage) n
0
1
2
3
Referral* 124 83(51)27(22)15(12)11 (9) Second” 77 51 (88)20(28) 4 (5) 2(3) Last (death)* 128 84 (88) 31 (24) 10 (8) 2 (1)
4 S(8) O(0) 1 (1)
138 patients with >l week in care “129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.01 Wilwxon-referral vs. last week of care (death): p < 0.0001
l
Table 2. STAS ratings for symptom control: number and percentage of patients with each rating Week of care
Ratings n (percentage) n
0
1
2
3
4
Referral* 125 8 (4) 32 (28) 42 (34) 30 (24) 15 (12) Second*’ 77 12(18) 17(22)21(27) 17(22) lO(13) Last (death)* 127 31 (24) 31 (24) 24 (19) 28 (21) 15 (12) 138 patients with >l week in care l *129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.05 Wilcoxon-referral vs. last week of care (death): p < 0.01
l
Table3. STAS ratings for patient anxiety: number and percentage of patients with each rating Week of care
Ratings n (percentage) n
0
1
2
3
4
Referral* 123 9 (7) 43 (35) 31 (25) 24 (20) 18 (13) Second” 78 12(18)25(33)17(22)18(24) 4 (5) Last (death)* 117 55 (47) 28 (24) 19 (18) 10 (9) 5 (4) 138 patients with >l week in care l *129 patients with >2 weeks in care (52/129 no contact with team) Wilcoxon-referral vs. second week of care: p c 0.05 Wilcoxon-referral vs. last week of care (death): p < 0.00005
l
control, patient anxiety and pain control. Symptom control remained a relatively severe problem, and at death 33% of patients still had severe ratings (3 or 4).
Discussion The characteristics of patients described here are similar to those of an earlier but smaller series.3
Ratings n (percentage) n
0
1
2
3
Referral* 122 74(81)27(22)14(11) O(0) 78 55(72) 12(18) 8 (8) 1 (1) Second** Last (death)’ 127 104(82) 18(12) 8 (5) O(0)
4 7(8) 2(3) 1 (1)
138 patients with >l week in care l *129 patients with >2 weeks in care (52/l 29 no contact with team) Wilcoxon-referral vs. second week of care: not significant Wilcoxon-referral vs. last week of care (death): p -z 0.001
l
Most patients were referred to the teams for symptom control and support. The STAS items ratings reflect this: symptom control and patient anxiety were severe in over 33% of patients at referral. Although significant improvements occurred during care for the four items, control of symptoms proved difficult for the teams to achieve, and we are concerned that a large proportion of patients (33%) had ratings of 3 or 4, indicating many problems in the last week of care. We will be investigating further if particular symptoms have been difficult to control. Common symptoms included: weakness, diarrhoea, muscle wasting, memory loss, visual problems and dyspnoea. We need to look more closely at symptom control throughout care - some symptoms may take time to resolve, others may present close to death. Quality of life is a subjective and multidimensional construct,’ and we have only been able to consider some aspects here. Furthermore, STAS ratings are the teams’ perceptions of patients’ and carers’ problems and needs. In an earlier study, patients in the care of BCCT were interviewed to record their perceptions and satisfaction with the team and to compare their ratings of these items with BCCTs ratings. Carers were also interviewed. Agreement between matched patient, carer and BCCI assessments was reasonable; patients and BCCT ratings were significantly correlated (Spearman p = 0.66, p < 0.005). However, patients assessed pain as significantly more severe than did BCCT (p < 0.05, Wilcoxon Z - 2.45).’ In response to this BCCT intends to carry out a study of their patients, who will be asked to assess their pain at weekly intervals, using the same scales as the team. Teams found it useful to record the STAS assessment, as this reflected the quality of life of Quality of Life Research . Vol 1 ~1992 49
E. Butters et al. patients and they could use this information in their clinical practice. Aaronson has recommended that, “. . . research designs and data collection procedures should be selected that minimize patient, medical staff, and institutional burden”.’ In this study it was possible to incorporate the STAS into the clinical setting as a ‘normal part of care’ rather than making a separate assessment. Other professionals working with people with HIV/AIDS may also find the STAS a useful method for evaluating their work and patients.
Acknowledgements We would like to thank the members of the two teams, and closely associated colleagues, for their work and helpful comments. Angela Wade and Mark Davis. We thank ‘Help the Hospice’ and Sainsbury’s Monument Trust whose funding made this study possible.
Appendix A. Definitions and ratings for pain control Pain control: the effect of his or her symptoms the patient.
on
0 = None. 1 = Occasional or grumbling single pain. Patient has usual activity and is not bothered to be rid of symptom. 2 = Moderate distress, occasional bad days, pain limits some activity possible within extent of disease. 3 = Severe pain present often. Activities and concentration markedly affected by pain. 4 = Severe and continuous overwhelming Unable to think of other matters.
pain.
References 1. Smits A, Mansfield S, Singh S. Facilitating care of
patients with HIV infection by hospital and primary care teams. BMJ 1990; 300: 241-243. 2. Pye M, Kapila M, Buckley G, Cunningham D, Eds. Responding fo the AIDS Challenge. A comparativestudy of local AIDS progrummes in the United Kingdom. Health
Definitions and ratings for symptom control Symptom control (not including pain): the effect of his or her symptoms on the patient.0 = None.
Education Authority. Harlow, Longman, 1989. 3. Butters E, Higginson I, George R, et al. Two commun-
ity HIV/AIDS teams: referrals, patient characteristics and pattern of care. Health Trends 1991; 23(2): 59-62. 4. Higginson I, Wade A, McCarthy M. A comparison of four outcome measures of terminal care. In: Gilmore A, Gilmore S, eds. A Safer Death: Multidisciplinary Aspects of Terminal Cure. New York: Plenum, 1988: 205-211. 5. Higginson I, Wade A, McCarthy M. Effectiveness of two palliative support teams. J Public Health Med 1992; 1: (in press). 6. Higginson I. Evaluation of carefor HIV/AIDS Pafienfs by Two Community Teamsin London, UK. Report commissioned by the Regional Programme for AIDS, World Health Organisation, Copenhagen, 1990. 7. Aaronson N, Meyerowitz B, Bard M, et al. Quality of life research in oncology. Cancer 1991; 67: 834-839. 8. Butters E, Higginson I, George R, McCarthy M. Terminal care for people with HIV/AIDS: comparing the views of patients, carers and providers. VIIth
International Conference on AIDS, Florence, 1991. 9. Aaronson N. Methodologic issues in assessing quality of life in cancer patients. Cancer 1991; 67: 844-850. (Received 27 September 1992; accepted in revisedform 5
November 2992) !%
Quality
ofLife
Research
. Vol 1 . 1992
1 = Occasional or grumbling single or few symptom(s). Patient has usual activity and is not bothered to be rid of symptom(s). 2 = Moderate distress, occasional bad days, symptoms limits some activity possible within extent of disease. 3 = Severe symptom(s) present often. Activities and concentration markedly affected by symptom(s). 4 = Severe and continuous overwhelming symptom(s). Unable to think of other matters.
Definitions and ratings for patient anxiety Patient anxiety: the effect of his or her anxiety on the patient.
HIV/AIDS
path ts
Appendix con timed
Definitions and ratings for practical aids
0 = None.
Practical aids: further need for practical aids at home, reflecting the difficulty for patient and family without aids.
1 = Worry over changes. No physical or behavioural symptoms of anxiety. Concentration not affected. 2 = Waiting for changes or problems: on the edge. Occasional physical or behavioural symptoms of anxiety. 3 = Anxious often. Physical/behavioural symptoms. Concentration markedly affected. 4 = Completely and continuously preoccupied with anxiety and worries. Unable to think of other matters.
0 = None needed. 1 = One aid desirable, ging at present.
not urgent,
patient
mana-
2 = One aid needed urgently i.e., the next day, or a few aids needed soon, patient or family experiencing some difficulty. 3 = Aids needed badly, some improvisation ible. 4 = Patient incapacitated
Quality
without
poss-
basic aids.
of Lifi Research
. Vol 1 .I992
51
