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The problems experienced by patients with cancer and their needs for palliative care

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Abstract

Objectives

To investigate the problems that patients experience and their met- and unmet needs for professional help. This information is necessary to tailor palliative care to patient needs.

Patients and methods

Patients (n=94) with disseminated cancer completed a validated checklist with 90 potential problems and needs for palliative care (PNPC questionnaire).

Main results

On average, patients experienced 37 problems (range 0–68) and required more professional attention for eight problems (range 0–71). The five most prevalent problems were: fatigue, heavy housework, coping with the unpredictability of the future, fear of metastases, and frustrations because I can do less than before. The five issues most in need of extra attention were: informational needs, coping with the unpredictability of the future, fear of metastases, fear of physical suffering, and difficulties remembering what was told (during consultations). Younger patients experienced more social, psychological, and financial problems. Some 10% of patients expressed a multitude of problems and needs.

Conclusions

While patients with metastasized cancer experienced a wide variety of problems, they asked for more support for only a few specific problems. Evidently, “problems” are not synonymous with unmet needs. Therefore, not only problems but also needs for care should be assessed. A structural need for support to cope with fears of suffering and loss of autonomy was found. Ten percent of patients expressed a multitude of problems and needs and might benefit either from psychological counseling or better palliative care.

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Acknowledgements

This research project was funded by the Netherlands Cancer Society (KWF). Authors wish to thank all participants who enabled this study: the KWF, participating GPs, the patient organizations, and especially the patients who devoted their time and effort to this study despite their difficult situations.

Author information

Authors and Affiliations

  1. Center of quality of care research (WOK), Radboud University, Nijmegen, The Netherlands

    Bart H. P. Osse, Myrra J. F. J. Vernooij-Dassen & Richard P. T. M. Grol

  2. Department of General Practice, Academic Medical Center, University of Amsterdam, Amsterdam, The Netherlands

    Egbert Schadé

  3. WOK 229, PO. Box 9101, 6500HB, Nijmegen, The Netherlands

    Bart H. P. Osse

Authors
  1. Bart H. P. Osse
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  2. Myrra J. F. J. Vernooij-Dassen
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  3. Egbert Schadé
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  4. Richard P. T. M. Grol
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Corresponding author

Correspondence to Bart H. P. Osse.

Appendix

Appendix

Descriptive data of problems and needs. Topics are grouped in dimensions and subsequently arranged in descending order of percent of population regarding the topic as a problem.

n=94

Is this a problem?

Do you need attention for this problem?

Refrain from carea

Unmet needs in patients with the problemb

Yes

Somewhat

No

Yes, More

As much as until now

No

Physical symptoms

Fatigue

36

56

8

18

56

26

18

20

Pain

20

47

33

18

42

40

8

26

(Nightly) sweating or hot flushes

19

31

50

10

33

57

11

20

Sleeping problems

18

33

49

12

36

52

8

24

Sexual dysfunction

17

20

63

12

21

67

8

31

Lack of appetite or change of taste

13

36

51

7

31

62

11

14

Loss of hair

12

26

62

3

23

74

16

9

Prickling or numb sensation

11

35

54

13

25

62

12

29

Cough

10

23

67

9

22

69

8

27

Nausea or vomiting

9

34

57

6

36

58

6

13

Difficulty in concentration

8

40

52

9

26

65

16

19

Shortness of breath

8

39

53

12

29

59

9

26

Constipation or diarrhea

7

25

68

2

21

77

11

7

Swelling of arms, legs, or abdomen (edema)

7

20

73

3

30

67

1

13

Itch

7

17

76

5

18

77

4

24

Mouth problems or swallowing problems

6

20

74

3

22

75

4

13

Impaired vision or hearing

2

24

74

3

17

80

10

13

Incontinence

2

14

84

0

16

84

5

0

(Instrumental) activities of daily living

Difficulties in doing heavy housework (cleaning, making beds, gardening, etc.)

62

24

14

14

42

44

30

16

Difficulties in shopping (food, clothes, etc.)

32

33

35

5

37

58

14

7

Difficulties in personal transportation (cycling, driving a car, using public transportation, etc.)

26

36

38

7

31

62

25

11

Difficulties in preparing meals or cooking

21

26

53

5

30

65

14

10

Difficulties in rising, walking, climbing stairs

17

35

48

4

29

67

21

9

Difficulties in doing light housework (tidying up, etc.)

16

32

52

7

30

63

13

14

Difficulties in body care, washing, dressing, or toilet

11

25

64

2

21

77

14

6

Role activities

Difficulties in employment or following a study

23

20

57

6

24

70

17

14

Difficulty in relaxing

7

46

47

11

37

52

11

21

Difficulty in filling the day

6

28

66

8

30

62

7

23

Difficulties in caring for children or baby-sitting

5

17

78

5

16

79

5

14

Social issues

Finding it difficult to talk about the disease because of not wanting to burden others

9

40

51

10

32

58

17

21

Loneliness

8

42

50

11

40

49

6

23

Problems in the contact with family, friends, neighbors, or colleagues

7

31

62

7

40

53

6

18

Others denying the severity of the situation

6

42

52

7

31

62

18

15

Difficulties in talking about the disease with life companion

6

31

63

7

30

63

11

19

Problems in the contact with (one of) the children

6

26

68

7

29

64

6

22

Difference of opinion what treatments should be used

4

23

73

8

30

62

4

30

Others dramatizing the situation

4

33

63

3

21

76

18

9

Others being overconcerned

2

52

46

5

34

61

23

9

Finding others not receptive to talking about the disease

2

43

55

9

29

62

15

21

Difficulties in finding someone to talk to (confidant)

2

30

68

11

29

60

5

36

Problems in the relationship with life companion

2

25

73

8

23

69

3

29

Being forsaken by others

2

23

75

5

31

64

4

18

Receiving too little practical help from life companion or from the family

1

18

81

2

25

73

2

12

Experiencing too little support by others

0

23

77

7

29

64

3

30

Psychological issues

Fear of metastases

33

50

17

25

52

23

10

30

Difficulty coping with the unpredictability of the future

28

57

15

25

50

25

11

29

Fear of physical suffering

20

55

24

24

47

29

11

31

Fear of death

16

46

38

21

40

38

9

35

Difficulties showing emotions

16

37

47

18

39

43

6

34

Difficulties seeing positive aspects of the situation

15

38

47

16

42

42

7

30

Not experiencing pleasure anymore

10

43

47

11

39

50

8

21

Fear of treatments

10

52

38

19

43

38

9

31

Depressed mood

9

62

29

15

46

39

14

22

Difficulties accepting a changed bodily appearance

9

31

60

7

38

55

2

17

Fear of being alone

8

28

64

9

34

57

2

25

Being overwhelmed by all the decisions that have to be made

6

44

50

8

44

48

5

16

Loss of control over emotions

3

44

53

14

35

51

8

29

Feelings of guilt

2

22

76

4

31

65

2

19

Feelings of shame

2

18

80

6

26

68

2

28

Loss of autonomy

Difficulties in continuing my usual activities

42

38

20

17

51

32

14

21

Frustrations because I can do less than before

27

54

19

20

46

34

16

25

Difficulty giving tasks out of hands

27

45

28

17

42

41

20

24

Difficulties in continuing social activities

26

40

34

14

42

44

13

21

Being dependent on others

25

46

29

13

46

41

15

18

Experiencing loss of control over one’s life

14

50

36

19

38

43

9

30

Experiencing loss of control over one’s body

13

52

35

16

39

45

10

25

Experiencing difficulties in asking for help

9

45

46

12

46

42

6

22

Experiencing difficulties in making one’s own decisions

5

37

58

9

41

50

8

21

Spiritual issues

Difficulties accepting the disease

26

43

31

23

45

32

13

33

Difficulties concerning the meaning of death

16

35

48

15

37

48

11

30

Difficulties being of avail to others

10

40

50

7

47

46

9

14

Difficulties being engaged usefully

9

37

54

10

41

49

6

22

Difficulties keeping confidence in God or religion

8

30

62

8

41

51

6

21

Financial and administrative issues

Extra expenditure because of the disease

15

27

58

23

27

50

3

54

Reduced income because of the disease

13

17

70

10

22

68

6

35

Difficulties in making arrangements (last will and testament, insurance, etc.)

6

11

83

10

14

76

1

60

Difficulties in filling in forms

3

21

76

4

22

74

6

19

Difficulties in making life companion acquainted with financial and administrative issues

2

12

86

3

17

80

0

25

Problems in consultations

Difficulties in remembering what was told

9

57

34

24

39

37

7

36

Difficulties in expressing disagreement

6

41

53

17

37

46

4

36

Difficulties in saying one doesn’t understand

3

36

61

13

36

51

3

34

  1. aRefrain from care: the percentage of the population (n=94) that does not want any professional attention for a topic despite experiencing the topic as a problem (Yes+Somewhat)
  2. bUnmet needs: the percentage of patients who need more professional attention for a topic as a percentage of those patients who actually experience that specific problem (Yes+Somewhat). n varies in this column

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Osse, B.H.P., Vernooij-Dassen, M.J.F.J., Schadé, E. et al. The problems experienced by patients with cancer and their needs for palliative care. Support Care Cancer 13, 722–732 (2005). https://doi.org/10.1007/s00520-004-0771-6

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