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DISTRESS INVENTORY - CANCER (DI-C) VERSION 2

USER’S MANUAL
ONCOLOGICAL DISTRESS
Various forms of ‘distress’ are evident in literature. However, it is observed that confusion does arise
over the conceptualisation of these variants. The focus of symptom distress need be confined to the
physiological aspects of the symptoms per se; and does not measure the intensity of the psychological
or emotional distress that the patient may experience. Psychological/Emotional distress is a function
of the individual’s unique life experiences, his/her social life-style and spirituality. These factors can
also influence symptom distress. General health, treatment, disease parameters, and family
relationships too contribute to global distress.
Distress, in specific reference to cancer, is defined as an unpleasant emotional experience of a
psychological (cognitive, behavioural, emotional), social, and/or spiritual nature that interferes with
the ability to cope effectively with cancer and its treatment. Distress extends along a continuum,
ranging from common normal feelings of vulnerability, sadness and fears, to problems that can
become disabling, such as depression, anxiety, panic, social isolation, and spiritual crisis 1.
The Distress Inventory - Cancer Version 2 (DI-C V2) therefore measures this specific construct - pre-
clinical distress, and not depression or anxiety or such similar clinical entities. The use of the DI-C V2
is anticipated to provide insight into identifying or screening cancer patients who, though not yet
clinically in need of psychiatric assistance, may do so in the near future if their ‘distress’ is left
unattended to. This sort of an early-warning system could provide the investigator/health care
provider, the possibility of enabling the patient to overcome specific distress issues through educative
and/or psychotherapeutic means.

ADMINISTRATION
The DI-C scale is designed for self-administration, but can also be administered by an interviewer.
For self-administration, patients should be asked to read the instructions at the top of the page. After
the patient’s correct understanding has been confirmed, the patient should be encourage to complete
every item in order without skipping any.
Some patients may feel that certain items are not applicable to them, for example a patient who is not
married or is a divorcee/widowed will not be able to answer items pertaining to spouse and children
in the Familial Domain. For such items (7 in all) the respondent would be required to circle the sixth
response column of ‘not applicable’ that is provided exclusively to this domain. On the whole the
patient should be encouraged to circle the response that is most applicable.

1
National Comprehensive Cancer Network (NCCN): Standards of care and management of distress panel. Standards of care for the
management of distress in patients with cancer. Available at http://www.ipos-aspboa.org/news/distress.htm
DI-C (Version 2) User’s Manual Page 1 of 8
SCORING THE DI-C V2
The DI-C V2 scoring guide identifies those items which must be reversed before being added to
obtain subscale totals. Negatively toned items are reversed by subtracting the response from “6”.
Care should be taken in the case of items in the ‘Familial domain’ being not-relevant to the
respondent, the score ‘0’ is retained. The procedure is detailed in Appendix 1. The Excel workbook
with formulas for calculation is also available with us, which can be provided on request.

HANDLING MISSING ITEMS


If there are missing items, subscale scores can be prorated. This is done by multiplying the sum of the
domain by the number of items in the domain, then dividing the number of items actually answered.
This can be done on the scoring guide or by using the formula as follows:

Prorated domain [Sum of item scores] x [N of items in domain]


=
score [N of items answered]

When there are missing data, prorating by domain in this way is acceptable as long as more than 50%
of the items in each domain are answered. The DI-C V2 is considered to be an acceptable indicator of
psychological distress in the patient as long as overall item response rate is greater than 80% of the
relevant items (i.e., having completed 26 of the 33 or 21 of 26 relevant items).
The tool’s total score is calculated by the following formulae:

Sum of six subscales scores


( (Maximum – minimum obtainable score of relevant items)
x 100 ) – 25
The Excel sheet for these calculations is available and can be provided on request.
The formulae will equate the total score of those who are single/divorced/ widowed and of those
that are married on a scale of 0 to 100, where 0 indicate ‘no distress’ and 100, ‘high distress’.

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VALIDITY AND RELIABILITY
Validity
Face validity: The DI-C appears to measure areas that are pertinent to the construct in question and
seems an appropriate measure.
Content validity: The items of the DI-C are based on six content areas identified from a review of
available literature, experts and patient interviews. These six content areas, viz., personal/emotional,
social support, medical impact, family relationship, spirituality, and self-confidence, were retained
for the subsequent tool revision the DI-C V2. As these content areas theoretically comprise of the
domains that influences the distress outcome, it could be concluded that the tool has content validity.
Construct validity: An indicator of the level of ‘distress’ (the effect of the construct) is expressed in
terms of the score of multiple items. Seventy three items were framed using the six identified content
areas. A factor analysis using principal component analysis in Varimax with Kaiser normalisation
rotation method, extracted six factors, having psychologically meaningful clustering of items. Table 1
shows the component transformation matrix (CTM) of the factor analysis.
Table 1: Component Transformation Matrix
Component 1 2 3 4 5 6
1 0.645 0.372 0.444 0.317 0.305 0.234
2 -0.157 -0.755 0.323 0.506 0.197 0.075
3 -0.665 0.530 0.163 0.426 0.204 -0.163
4 0.216 0.065 -0.475 0.674 -0.519 -0.034
5 0.152 -0.062 -0.597 0.089 0.734 -0.265
6 -0.218 0.046 -0.300 0.004 0.136 0.917

The sixth factor had two negatively and positively toned items measuring a single event (vide Table
2). It was therefore decided to delete the second item and treat the sixth factor as a single item
construct. Another item was deleted from the first factor, due to negative factor loading. The need for
the exclusion of the item is discussed in detail elsewhere2.
Table 2: Showing items loaded onto Factor 6 and respective factor loading.
Factor loading Item
0.81931 I need assistance to carryout the activities of daily living.
0.80458 I am able to carryout my daily activities without any hindrance.

The Distress Inventory therefore contains five factors and a single item construct, that were named
appropriately (Vide Table 3).

2
Thomas BC. Modelling Distress in Cancer Patients - A Psycho-Futuristic Approach. Doctoral thesis, Faculty of Applied Sciences,
University of Kerala, 2006
DI-C (Version 2) User’s Manual Page 3 of 8
Table 3: Labelling of the subscales of the Distress Inventory for Cancer.
Subscale Label
I Emotional
II Familial
III Social
IV Spiritual
V Medical
VI Activities of Daily Living (ADL)

Confirmatory Factor Analysis (CFA): A Confirmatory factor analysis using Principal Component
Analysis in Varimax rotation with Kaiser normalisation on the 33-item questionnaire, extracted five
factors. The item clustering obtained in the exploratory factor analysis for the five factors were
reproduced. The CTM of the same is tabulated in Table 4.
Table 4: Component Transformation Matrix of Confirmatory Factor Analysis
Component 1 2 3 4 5
1 0.636 0.401 0.480 0.330 0.309
2 0.112 0.774 -0.342 -0.486 -0.186
3 -0.725 0.484 0.146 0.434 0.174
4 0.224 0.057 -0.483 0.676 -0.506
5 0.084 -0.046 -0.631 0.098 0.764

Criterion-related validity: The DI-C and its sub-scales exhibit the predictive function of criterion
validity by identifying which groups of patients are likely to display non-compliance to treatment
and follow-up routines.
Reliability
The alpha of the DI-C V2 scale was found to be 0.9, and the sub-scale alpha scores ranged from 0.68 to
0.87. The alpha score for the ADL subscale was not calculated as it is a single item subscale. The
subscale alpha scores ranged from 0.62 to 0.82, and are detailed in Table 5.
Table 5: Alpha scores for sub-scale and overall DI-C V2 scale
Subscale Label Alpha
I Emotional 0.87
II Familial 0.85
III Social 0.77
IV Spiritual 0.81
V Medical 0.68
VI Activities of Daily Living (ADL) -*
DI-C V2 0.90
*Single item subscale

DI-C (Version 2) User’s Manual Page 4 of 8


The DI-C items were rearranged such that the items of the familial domain were placed last, as some,
items in this factor may be marked as ‘not applicable’ by the subjects who are unmarried, or are
divorced/ widowed with children.
In the present form DI-C V2 is well suited for research studies which deals with distress and its
correlates. However, the use of the tool in the clinical setting involving individual cases requires well-
established normative scores. The percentiles for the DI-C V2 are being calculated and will be
available shortly.

TRANSLATIONS
Though the English version of the DI-C V2 was initially developed, the Malayalam version of the tool
was validated first as it is the first language of the current patient population. The translation process
from English to Malayalam followed the customary forward-backward-forward translation process.

STUDIES ON THE DISTRESS CONSTRUCT AND THOSE USING THE DI-C TOOL
PUBLICATIONS
Thomas BC, NandaMohan V, Nair MK, Pandey M. Gender, age and surgery as a treatment modality leads to
higher distress in patients with cancer. Supportive Care in Cancer, 2011, 19:239-250.
Thomas BC, NandaMohan V, Nair MK, Robinson JW, Pandey M. (2009) Screening for distress (the sixth vital
sign) in a global recession: A sustainable approach to maintain patient centered care. Future Oncology. 5(5),
727-38.
Thomas BC, Thomas I, NandaMohan V, Nair MK, Pandey M. (2009) Screening for distress can predict loss of
follow-up and treatment in cancer patients: Results of development and validity of the Distress Inventory for
Cancer Version 2. Psycho Oncology May, 18(5):524-33.
Pandey M, Devi N, Thomas BC, Vinod Kumar S, Krishnan R, Ramdas K. (2007) Distress overlaps with anxiety
and depression in patients with head and neck cancer. Psycho Oncology. 16: 582–586.
Pandey M, Sarita GP, Devi N, Thomas BC, Hussain BM, Krishnan R. (2006) Distress, anxiety, and depression in
cancer patients undergoing chemotherapy. World J Surgical Oncology. 4: 68.
Pandey M, Thomas BC, SreeRekha P, Ramdas K, Ratheesan K, Parameswaran S, Mathew BS, Rajan B. (2005)
Quality of Life determinants in women with breast cancer undergoing treatment with curative intent. World
J Surgical Oncology. 3: 63
Thomas BC, Pandey M, Ramdas K, Thomas I, Changat M, Nandamohan V, Nair MK. (2004) Identifying and
predicting behaviour outcomes in cancer patients undergoing curative treatment. Psycho Oncology. July,
13(7):490-3.
Thomas BC, Nandamohan V, Thomas I, Pandey M. (2002) Development of a distress inventory for cancer:
preliminary results. J Postgrad Medicine. 48: 16-20.

PUBLISHED ABSTRACTS
Thomas BC, Thomas I, NandaMohan V, Nair MK, Pandey M. (2006) Redefining the construct of ‘Distress’ in
cancer: Development and validity of the Distress Inventory for Cancer Version 2. Psycho Oncology 15 (S2):
Abstract #255

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Pandey M, Devi N, Ramdas K, Krishnan R, Thomas BC. (2006) Distress, anxiety and depression in patients
with head neck cancer undergoing treatment with curative intent. Psycho Oncology 15: Abstract #842.
Pandey M, Thomas BC, SreeRekha P, Ramdas K. Quality of Life Determinants in Indian Women with breast
cancer undergoing treatment with curative intent. Psycho Oncology 2006; 15 (S1): Abstract #17-1
Hussain BM, Sarita GP, Devi N, Thomas BC, Rita Krishnan, Ramdas K, Rajan B, Pandey M. Effect of
chemotherapy on the distress and quality of life of cancer patients. Blood 2004; 104: Abstract #5296.
Thomas BC, Pandey M, Parameshwaran S, Rajan B, Nair MK. Preliminary results of an ongoing study on
quality of life in women with curable breast cancer. Psycho Oncology 2003; 12: Abstract #306

PRESENTATIONS:
Thomas BC, Thomas I, NandaMohan V, Nair MK, Pandey M. Talk: Redefining the construct of ‘Distress’ in
cancer: Development and validity of the Distress Inventory for Cancer Version 2. 8th World Congress of
Psycho-Oncology, Venice, Italy; October 18-21, 2006.
Pandey M, Thomas BC, SreeRekha P, Ramdas K. Talk: Quality of Life Determinants in Indian Women with
Breast Cancer Undergoing Treatment with Curative Intent. American Psychosocial Oncology Society (APOS)
3rd Annual Conference, Amelia Island, Florida, USA; February 16-19, 2006.
Hussain BM, Sarita GP, Devi N, Thomas BC, Rita Krishnan, Ramdas K, Rajan B, Pandey M. Talk: Effect of
chemotherapy on the distress and quality of life of cancer patients. Effect of Chemotherapy on the Distress
and Quality of Life of Cancer Patients. 46th Annual meeting of the American Society of Hematology (ASH),
San Diego, California; December 4-7, 2004.
Thomas BC, Pandey M, Parameshwaran S, Rajan B, Nair MK. Poster: Preliminary results of an ongoing study
on quality of life in women with curable breast cancer. 6th World Congress of Psycho-Oncology, Banff,
Alberta, Canada; April 2003.
Thomas BC, Pandey M, Ramdas K, Nair MK. Talk: A Case Control study into the Quality of Life of women
with Breast Cancer. First SAARC Conference on Clinical Oncology, Dhaka, Bangladesh; March 8-10, 2001.
Thomas BC, Nandamohan V, Thomas I, Pandey M. Talk: Psychological Distress among Cancer Patients:
Development of a Distress Inventory for Cancer. First SAARC Conference on Clinical Oncology, Dhaka,
Bangladesh; March 8-10, 2001

THESIS AND DISSERTATION WORK:


Thomas BC. Measuring psychological distress in the cancer patient. M. Phil dissertation; Faculty of Applied
Sciences; Kerala: University of Kerala, 2000.
Sarita GP. Measurement of distress, anxiety, depression and quality of life of cancer patients undergoing chemotherapy.
Post graduate dissertation, Faculty of Social Sciences; Kerala: University of Kerala, 2004.
Devi N. Measurement of distress, anxiety, depression and quality of life of head and neck cancer patients undergoing
treatment by different modalities. Post graduate dissertation, Faculty of Social Sciences; Kerala: University of
Kerala, 2004.
Thomas BC. Modelling Distress in Cancer Patients - A Psycho-Futuristic Approach. Doctoral thesis, Faculty of
Applied Sciences; Kerala: University of Kerala, 2006.

DI-C (Version 2) User’s Manual Page 6 of 8


INSTRUCTIONS FOR SCORING THE DI-C V2
1. Record answers in “item response” column. If missing, mark with an X.
2. Recode A, B, C, D, and E, as 5, 4, 3, 2, and 1, respectively.
3. Subscale 6: Retain non-relevant items score as 0.
4. Perform reversals as indicated to obtain “item scores”.
5. Multiply the sum of the item scores by the number of items in the domain, and then divide by the
number of items answered. This produces the prorated domain score.
6. Use the standardisation formula to calculate the total score.

Domain Item number Reverse? Item response Item score


ED1 6 - =
ED2 0 + =
ED3 0 + =
ED4 0 + =
Emotional ED5 6 - =
Domain (ED) ED6 0 + =
ED7 0 + =
ED8 0 +
ED9 0 +
ED10 0 + =
Sum of Item score

Sum of Item score = x 10  =


Enter number of items answered  ED score

Domain Item number Reverse? Item response Item score


SpD1 6 - =
SpD2 6 - =
Spiritual
SpD3 0 + =
Domain (SpD)
SpD4 6 - =
SpD5 6 - =
Sum of Item score

Sum of Item score = x 5  =


Enter number of items answered  SpD score

Domain Item number Reverse? Item response Item score


SD1 6 - =
SD2 6 - =
Social Domain SD3 6 - =
(SD) SD4 6 - =
SD5 6 - =
SD6 0 + =
Sum of Item score

Sum of Item score = x 6  =


Enter number of items answered  SD score

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Domain Item number Reverse? Item response Item score
MD1 0 + =
Medical MD2 6 - =
Domain (MD) MD3 0 + =
MD4 6 - =
Sum of Item score

Sum of Item score = x 4  =


Enter number of items answered  MD score

Domain Item number Reverse? Item response Item score


Activities of
Daily Living ADL1 0 + =
(ADL)
Sum of Item score

Sum of Item score = x 1  =


Enter number of items answered  ADL score

The relevant items in the following domain are treated as were the items in the previous domain. However,
items coded as ‘0’, are retained as they are. Proration, if needed is done only amongst the relevant items (RI).

Domain Item number Reverse? Item response Item score


FSD1 6 - =
FSD2 0 + =
FSD3 6 - =
Familial
FSD4 0 + =
Domain (FSD)
FSD5 0 + =
FSD6 6 - =
FSD7 0 + =
Sum of Item score

Relevant Items (RI) =

RI 
Sum of Item score = x  =
Enter number of RI answered  FSD score

Total Score =

 – 25
ED score + SpD score + SD score + MD score +ADL score + FSD score
x 100
([26 + RI] x 5) – (26 + RI)

For guidelines on handling missing data, please refer to the administration/scoring procedures in
the DI-C manual. An Excel file containing the formulas for score calculation is available and can be
provide on request.

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