The illusive phantom: does primary care meet patient need following limb loss?

PURPOSE: Anecdotal evidence suggests that General Practitioners (GPs) vary in their understanding of phantom pain and associated factors in amputees. This has implications in that the GP's conception of the problem will determine what treatment or referral is offered. METHOD: The present study aimed to explore GP's knowledge and understanding of phantom limb pain using a postal questionnaire. A sample of 129 GPs responded resulting in a response rate of 38%. RESULTS: The results suggest that GPs underestimate the prevalence, intensity and duration of phantom and residual limb pain. Moreover, inconsistencies in the reasons given for referral to specialist services for the management of phantom pain were reported. CONCLUSION: These findings have serious implications for the management of phantom limb pain, disability and psychological distress in amputees in that GPs not only provide first line treatment, but are also the gatekeepers for referral to other services. Given this, the role of other professionals within the primary health care team may prove an additional resource for providing both support and accurate information to amputees in the community.

The need for accurate perception and informed judgement in determining the appropriate use of the nursing resource: hearing the patient's voice.

From the perspectives of both an espoused core underlying value of nursing, and of public policy, the patient's voice should be central to our understanding of patient/client need, appropriate care and intervention. However, accessing and hearing the patient's voice is fraught with difficulty. Edwards (2001) reminds us that our raison d'être as nurses is human vulnerability; a vulnerability sometimes brought into sharp focus because of illness or disease. However, when people are at their most vulnerable, they are often least able to identify, or indeed to express, their need - beyond the completely obvious. This paper provides a short descriptive record of one patient's experience of nursing care. This description is placed within the context of moral arguments about the nature of nursing and the impact this may have on decision-making regarding the appropriate distribution of nursing time. One of our most acute deficits in knowledge, regarding nursing in the UK and Ireland, is a lack of knowledge of the day-to-day activities judgements, decisions and interventions of staff nurses at the sharp edge of patient care delivery. We also have little understanding of how, or indeed whether, staff nurses identify or articulate these activities, judgements, decisions and interventions as having a moral dimension that is rooted in respect for the needs and perceptions of the individual patient. Recent empirical work suggests that a substantial proportion of nursing time is spent in prioritizing and delegating care. We have little idea of the impact of prioritization and delegation on the quality of patient care, as perceived by the recipients of that care, our patients. It is urgent that these deficits in our knowledge and understanding are addressed. This is the case both from the perspective of providing high standards of patient care and from the point of view of linking perceptions of the moral dimension of nursing practice, organizational structure, manpower planning, nursing decisions and interventions, to patient outcomes.

Psychological distress in amputees with phantom limb pain.

Research suggesting that psychological factors play a role in phantom limb pain abounds in the literature. Despite recent research suggesting that these factors exacerbate rather than cause phantom limb pain, clinicians still frequently use personality as a rationale to explain amputees' phantom limb pain. The present study aimed to examine psychological distress in a working-age population of amputees not specifically seeking help for their pain. The study was conducted in two phases. Phase 1 included 315 amputees who completed the General Health Questionnaire (GHQ). Phase 2 included a subset of the original sample who completed the Beck Depression Inventory (BDI). In Phase 1, although over 50% of the sample reported GHQ scores over the threshold used to detect "caseness," this was not related to phantom limb pain. In Phase 2 of the study, only 15% of the sample reported moderate to severe symptoms of depression. Only 4% of the variance in phantom limb pain was accounted for using the overall BDI score. When BDI items were examined individually within regression models, a number significantly predicted phantom limb pain. However, the items most related to phantom limb pain were those involved in "performance difficulties" rather than "negative affect." The present study suggests that negative affect in amputees may be related to disability rather than pain.

Variation in phantom limb pain: results of a diary study.

Amputees experience multiple, complex problems in addition to phantom limb pain. Although studies have yielded useful data on the relationship between phantom limb pain and other variables, this research generally has evaluated only one aspect of phantom limb pain and measured it at only one time point. The present study examined ongoing phantom limb pain and associated factors prospectively through the use of hourly pain diaries that are completed over a 7-day period. The sample comprised a subset of 89 lower limb amputees taking part in a longitudinal research study. Subjects had a mean age of 46.1 years. Forty-seven per cent were female, 53% male. Subjects completed a Pain/Coping Diary that measured phantom limb pain intensity, activity levels, medication use, and alcohol use on an hourly basis over a 7-day period. It also asked subjects to list the coping strategies used on the same hourly basis over a 7-day period. The diaries highlighted the following: Phantom limb pain appears to be episodic in nature and there is great variation in its intensity. Amputees use a limited repertoire of coping strategies to deal with episodes of phantom limb pain, and of those strategies that are used, few reduce the level of pain. This variability in phantom limb pain has important implications for those involved in the care of amputees as a report of phantom limb pain at a given point in time may not reflect the amputee's overall pain experience.

Memory for labor pain: a review of the literature.

BACKGROUND: Women's ability and accuracy in recalling labor pain are widely debated, even though clinicians commonly use such retrospective information in their practice. The objectives of this paper are to review the literature to establish if labor pain is forgotten, if recall is accurate, factors that affect the accuracy of recall, and consequences of recall. METHODS: An electronic search of Medscape, Psychlit, Bath Information and Data Services, and CINAHL between 1990 and 1999 was undertaken using the key words "labor" and "labour," "pain," and "memory." Each key word produced thousands of hits, but the combination of all three was surprisingly unsuccessful. This review, therefore, used a manual and print search and a detailed knowledge of work in this and related fields. RESULTS: The literature was relatively limited, and many studies demonstrated methodological problems. Inductive and deductive analysis suggested that women do not completely forget labor pain, and recall is often vivid but not always entirely accurate. CONCLUSIONS: Memories of labor pain can evoke intense negative reactions in a few women, but are more likely to give rise to positive consequences related to coping, self-efficacy, and self-esteem.

Measuring the stress associated with caring for clients with HIV/AIDS.

The AIDS-stress scale (Pleck et al., 1988) provides measures of the sources of stress faced by health care workers caring for people with AIDS. The aim of the study was to consider the utility of the scale as a means of identifying groups of health care workers who would benefit from intervention. Data were collected from a sample of Scottish health care workers (n = 140), all with known contact with clients with HIV or AIDS within the year prior to data collection. Three factors were derived from the AIDS-stress scale: 'lack of knowledge', 'discomfort' and 'work load'. Each showed a different pattern of association with occupational, training and attitudinal measures. The factor scores had some degree of concurrent validity and were not, in the main, associated with the desire to give socially desirable responses. The results were discussed in relation to appropriate interventions.

Assessing the pain of people with cognitive impairment.

This review presents evidence of the undertreatment of pain for people with cognitive impairment and explores reasons for this, emphasizing inadequate detection due to lack of suitable pain assessment protocols. Implications for practice and suggestions for further research are made.

HIV/AIDS and health care workers: contact with patients and attitudes towards them.

Data on a range of variables associated with contact with patients with HIV/AIDS and attitudes towards them were collected from 174 Scottish health care workers. Measures of attitudes and contact (overall, social and physical) were derived from the scales devised by Pleck et al. (1988). The measure of overall contact was not significantly related to attitudes, but those with predominantly social contact with patients with HIV/AIDS had more positive attitudes towards them. This relationship was moderated by occupational characteristics, concern about working with people of unknown HIV status and neuroticism. With all these variables controlled, including social contact, those who had not received in-service training relating to HIV/AIDS had more negative attitudes. The results are discussed with regard to the measurement of social contact with patients, salient beliefs, the occupational characteristics associated with attitudes, and in-service education.

Pain memories in phantom limbs: a case study.

Pain experienced in a limb prior to amputation may influence the course of phantom limb pain many months later. Katz and Melzack (1990) found that 42% of their sample reported a 'somatosensory pain memory' which resembled the quality and location of a painful, or non-painful pre-amputation sensation. For many amputees, pain memories are vivid experiences which incorporate both emotional and sensory aspects of the pre-amputation pain (Katz 1992). Katz and Melzack (1990) suggest that sensory input will 'trigger' somatosensory pain memories while the affective component of a pain memory is generated by the intensity, quality and location of the current experience of phantom limb pain. The present case study used a diary design to examine whether 'triggers' could be identified for somatosensory pain memories. Over a 9-month period, the patient reported daily experience of ongoing phantom limb pain, generally confined to the distal part of the limb, and 5 episodes of injury-related phantom limb pain, primarily experienced in the calf of the missing limb. A 'trigger' was identified for each of the episodes of injury-related phantom limb pain, and a significant finding in this study was that two episodes of injury-related phantom limb pain were associated with cognitive and/or emotional, rather than sensory 'triggers'.

Coping with labor pain.

This exploratory study aimed to examine the nature, origin, and effectiveness of pain coping strategies used during childbirth. The labor pain of 51 British women was assessed around the time of birth by visual analogue scales and the McGill Pain Questionnaire. The use of pain coping strategies and their origins was established through the analysis of data obtained in an extended semi-structured interview. Subjects were found to use a range of strategies during labor, many of which they had previously used to cope with pain. The nature of these strategies was, in essence, similar to that described in the empirical literature on pain coping, though it appeared that strategies had often been acquired informally as well as through structured training. The total number of strategies used in labor was negatively correlated with levels of labor pain.

Memory for labor pain: context and quality.

The accuracy of memory for labor pain context and quality was examined in 33 women who had given birth 3-4 years previously, utilizing the McGill Pain Questionnaire and unstructured recollections of childbirth events. Subjects displayed very good memory for the context of labor pain but poor memory for its quality. In order to test whether recall was influenced by semantic information a second study investigated the extent and type of knowledge which exists about the nature of labor pain amongst 33 women who had never given birth. The description of labor pain provided by nuliparous women was found to be similar in terms of category selection and descriptors to that of parous women. This suggests that women have available semantic information about labor pain which may influence their pain recall or even their assessment of a pain experience.

The role of coping in adjustment to phantom limb pain.

Research has indicated that the way individuals cope with pain may influence pain, and physical and psychological adjustment. The present study assessed the relationship between coping strategy use and adjustment in amputees with phantom limb pain (PLP). Coping strategies were measured using the Coping Strategies Questionnaire (CSQ) and their relationship with adjustment was examined using both composite scores and individual strategy scores. The results indicated that the relationship between coping and adjustment was primarily explained by the use of strategies within the 'Helplessness' factor of the CSQ. A clearer picture of coping strategy use was gained from examining individual strategies rather than the composite measures. Catastrophizing explained the largest proportion of variance in pain report (26%), while increasing behavioral activity and hoping or praying strategies explained a smaller proportion of the variance (3% and 1%, respectively). Catastrophizing also explained a large proportion of the variance in physical and psychosocial dysfunction (11% and 22%), while hoping or praying strategies accounted for only a small proportion of the variance in physical dysfunction (3%), and re-interpreting pain sensations accounted for a small proportion of the variance in psychosocial dysfunction (3%). The findings in this study have important clinical implications in that coping strategy use was associated with increased, rather than decreased, levels of pain and disability. However, since the reported use of coping strategies in the present study was low, further research, perhaps utilizing other measures of coping, is required to clarify these findings.

Do low levels of labour pain reflect low sensitivity to noxious stimulation?

In a study investigating factors affecting labour pain, 10 out of 97 subjects reported that they had never experienced any pain outwit childbirth. These subjects experienced comparatively low levels of pain within childbirth. They did not differ significantly from the majority of subjects on a large number of obstetric and psychological factors which normally affect pain in labour. It was suggested that these subjects were relatively insensitive to noxious stimulation, in that they do not experience pain when noxious stimulation is mild or moderate (as for example a consequence of menstruation, common accidents or ailments) and experience lower than average levels of pain when noxious stimulation is intense as in labour. Further investigation of such subjects is of theoretical interest and practical importance since it might allow for accurate prediction of pain levels in a proportion of parturants.